Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 11/12

By Miriam Lippel Blum

There are 35 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/9. 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 the blog report.
• Kamal Shah's Blog  Kamal struggles with his parathyroid hormone level (PTH) and wishes someone else could worry about all this stuff for him; has bone pain and is having his Vitamin D level tested, perhaps supplements will help.
• Toastiest shares two more pet pictures to cheer up the mood.
• The Life of a 20-Something With Lupus Flo finished her accounting test, is bringing Clorox wipes to work to clean her computer keyboard to avoid getting sick (Good idea, Flo, maybe wipe down the phone, too.));  Flo decides not to sweat the small stuff.
• Becky Perry has a review of Fit to Be Tied by Robin Lee Hatcher. 
• Jack's Kidney Adventure Jack urges people to write their Senators to support including the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S.565) in whichever healthcare reform legislation Congress may approve.
• Life on dialysis ... and now life after my transplant! Holly renames her blog, now called Transplant, Tantrums, & Tiaras to celebrate the one year anniversary of her transplant, new life, new blog, she posts a description and photos of her graduation day. (Congratulations, Holly! May  you go from strength to strength.)
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the Benlysta studies to a special Webinar on Monday, November 30, 2009 at 7 p.m. EST. LFA’s Medical Director, Dr. Joan Merrill, will review the results of the studies and answer questions.
• I Am. Are you? Dr. Juan Carlos Caicedo,– a transplant surgeon and Director of Northwestern Memorial Hospital’s Hispanic Transplant Program is named in the 40 Under 40 list that honors 40 hardworking, inspiring innovators in Chicago’s professional community; Donate Life Illinois' Campus Challenge week 5 update; announces Nov. 13 -15 is Donor Sabbath when nationwide, faith leaders will participate in services and programs to educate their congregations about donation and transplantation and the critical need for donors, the post  includes links and a video for more information on religion and organ donation.
• Dialyse This hopes she can hide her cough from the dialysis nurses so she doesn't have to wear a mask during dialysis.
• Bud's Ramblings Bud worries about flooding due to all the rain, his sister is sick.
• Linda Gromko MD kidneycare Linda and Steve hired an interior designer, Jane McClure, to help work out creative ways of hiding their home dialysis paraphernalia when they wanted to sell their house.  This not only helped them successfully sell their house and make their teenage daughter happy,  but has resulted in a wonderful  book co-authored by Linda and Jane. Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor is a book every home dialyzor and caregiver should read.  It gives practical advice on how to camouflage dialysis equipment and inexpensively create new storage so as to make your dialysis space more convenient and appealing, along with discussing how to really live with dialysis at home. It also has material focusing on caregiver needs, including how to recognize and avoid caregiver burnout.  It is an excellent, positive, upbeat book that does not condescend.  It is available from their website http://www.arrange2live.org/, and through Amazon.com.(If you want to know what "the underwear factor" is read Linda's blog post or, better yet, order the book and find out. I have it now on my shelf and am glad I do.); Linda explains what "anniversary phenomenon" is and gives an example from personal experience.
  
• Precious Bodily Fluids has an important case study regarding how acute kidney injury can be caused by a drug interaction between antibiotics and statin drugs.
• Renal Fellow Network has a post on understanding the normalized protein catabolic rate (nPCR); and a post on classification of cryoglobulins and membranoproliferative glomerulonephritis (MPGN).
• Uremic Frost reports on a study showing that the transfusion rate of cancer patients was not lowered despite use of ESA's.
• UKidney  Genzyme Corp. announced that it has launched a powder form of its phosphorus binder Renvela in the United States.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) Alejandro reports that his new Dialysis Patients social network has acquired 110 members with dialyzors in Argentina, Mexico, Spain, Peru, Chile, Columbia, Venezuela, Guatemala, the U.S., Nicaragua, Uruguay, the U.K.,Ecuador, Cuba, and Bolivia. (Bravo, Alejandro, for helping bring them all together.)
• pkdmom2five thinks that it takes a strong person to pull away from a spiritual abuser, and those  still blinded by him sincerely need prayers.
• Dialysis and Me Barry makes plans for storm Ida,  is given the run around by his gastroenterologist who has yet to sign off on clearance for transplant.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to find locations near you for both the seasonal and H1N1 flu vaccines.
• Lemonade and Kidneys Ruth shares photos of a fabulous cake she baked; raised $9,025 for PKD this year. (Way to go, Ruth!)
• The inner game of PKD How PKD may be a 24/7 “Life Sentence,” but it doesn’t have to imprison you!
• 3 1/2 Hours of Free Cable Jason hopes he'll get a kidney before he has to deal with the renal diet, almost got a kidney last month but it fell through; found inspiration to live after his kidney failed from his young niece.
• I need a kidney Jason writes about the documentary on rock musician and transplant recipient Pat Spurgeon that is airing on PBS, links to a public service announcement by Maggie Gyllenhaal, as well as a quiz about organ donation.
• Michael W. Newman describes a disturbing incident that occurred during his in-center HD treatment and wonders if it was retaliation for having complained. (I hope that's not the case.); feels that the presence of a family member who is there to attend to a woman with dementia in the dialysis unit violates HIPPA. (I don't think it does as she is there to assist.)
• PKD World gives links to two more blogs on PKD; according to a Japanese study, an intravascular treatment for intractable symptomatic polycystic kidney and liver due to autosomal dominant polycystic kidney disease (ADPKD) is highly effective; an announcement of a clinical trial in Italy that will evaluate whether the administration of everolimus (1.5 mg/day) can slow down the progression of CKD in ADPKD patients; a charity wine tasting in Missouri to raise funds for PKD.
• Renal BizBlog links to a variation of Google Maps that helps users find flu shots based on their Zip code. Click HERE to access the map.
• Living with PKD One of Heather's fellow runners twists an ankle and might not be able to run the half-marathon with them, Heather contemplates pushing her to the finish line in a wheelchair like Rick and Dick Hoyt.

Dialysis & CKD Blog Report 11/9

By Miriam Lippel Blum

There are 38 days left to make your comments to CMS regarding the proposed payment rules.  Make your voice heard!  It matters.

Here are the CKD related blogs updated since my last report on 11/6. 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 the blog report.
• Kaply, Inc. Tracy's sinus surgery is tomorrow, she's nervous but hoping for relief from six years of sinus infections. (We all send wishes for a good outcome and speedy healing.)
• Toastiest posts Jon Stewart's comedic impersonation of Glenn Beck; Toastie has a terrible day at work and his depression is deep, writes a letter to his doctors asking for urgent help; writes about work difficulties; changes the mood with a great photo of his cat looking happy.
• Hasten down the wire Michael thinks the newly passed House healthcare legislation is at best mediocre, at worst pitifully lacking.
• The Life of a 20-Something With Lupus Flo successfully posts to her blog using her Blackberry; had a great day planned but a lupus flare ruined it; struggled with a badly written exam and yearns for her upcoming Florida vacation. (Warm beaches coming soon, Flo. Hang in there.)
• Jack's Kidney Adventure Jack ponders the illusion of intimacy created by familiarity with a medical condition after a workshop participant pours out her daughter's renal failure story to him and asks for advice.
• On the Road to a Cure has an H1N1 flu advisory for people with lupus.
• I Am. Are you? Donate Life Illinois is giving away free tickets to a special private show with Carrie Underwood at Joe’s Bar in Chicago on December 3. Click over to the Donate Life Illinois Facebook page for details.
• Chronic Chick Talk shares a poem asking lupus to run away; considers the benefits of remote access software; shares a Sheryl Crow video for Music Monday; can't believe 2009 is almost over and wonders what gift to get her daughter for Christmas.
• Dialyse This gets her flu shots, has a bad reaction to the H1N1 vaccine, wishes she could get shots through her catheter instead of being jabbed.
• Linda Gromko MD kidneycare Linda shares what she learned at the Northwest Kidney Center's forum on Medicare bundling, encourages dialyzors to submit comments to CMS.
• Renal Fellow Network A demonstration project showed how human Serum Amyloid P (hSAP) potently inhibits fibrosis in models of renal fibrosis.  The findings raise the possibility of using hSAP as a therapy for kidney diseases with a prominent fibrotic component, such as diabetic nephropathy or chronic allograft nephropathy; four general categories of secondary causes of membranous nephropathy; complement levels and glomerulonephritis.
• UKidney reports that NxStage had strong financial results in the 3rd quarter of this year; a Harvard study showed that women who drink two or more diet sodas a day experienced a 30 percent drop in kidney function over the course of a two decades long study. (Time to switch to water with a slice of lemon added.)
• History of Nephrology has an article about the first successful kidney transplants.
• pkdmom2five posts photos of friends' new baby and congratulates the parents.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article about how to make healthcare better according to Brent James, MD,  who is the chief quality officer at Intermountain Healthcare, a network of hospitals and clinics in Utah and Idaho that President Obama and others have described as a model for health reform; a photo of Halloween at the White House; a link to a comic entitled "Organ Donor."
• Lemonade and Kidneys Ruth considers going back on anti-depressants for the weight loss; shares a photo of her Jack-o-Melons.
• Mid-life ramblings Dianne is appalled at how the H1N1 vaccine was distributed and not distributed in her State of Texas.
• My Chronic Kidney Disease gives a positive review of  Coping with Kidney Disease: A 12-Step Program to Help You Avoid Dialysis by Mackenzie Walser and Betsy Thorpe.
• My New (transplanted) Kidney Al got his flu shots (both kinds) and updates on his condition, lab results, drugs, and exercise 3 1/2 months post-transplant.
• 3 1/2 Hours of Free Cable is a brand new blog. In his pilot post, Jason introduces himself and discusses his history with CKD and transplantation. He hopes to chronicle his dialysis experience for those who are unfamiliar with it, as well as connect with fellow dialyzors.
• Michael W. Newman notes that a nursing home staff person attended the woman with dementia at dialysis and that seemed to be helpful.
• Kidney Diet Tips  A recent study by DaVita dietitian Debbie Benner, MA, RD and collaborators reveals that changing to nocturnal dialysis may make it easier for dialysis patients to eat enough protein and keep phosphorus normal.

MIRIAM'S WEBSURFING FIND: If you need help paying for medications, check out this recently updated  page compiled by psychologist, Ken Pope. Resources for Finding Health Insurance and Affordable Medications. It includes web sites that provide information helpful in finding free or low-cost medications.

The list is annotated and includes links to all the websites. These free sites -- run by groups like Consumer Reports & the U.S.Department of Health & Human Services -- match patients with programs providing free or low-cost meds to those in need who can't afford them. Some offer comparison shopping to find the least expensive reliable sources. While some sites are for all patients, others focus on particular groups (e.g., kids, the elderly, those who were in the military including the National Guard and Reserves).

There are also sites that provide extensive information for anyone searching for good, affordable health insurance. Although it might not be too helpful for those of us with CKD5, it may still be a helpful resource for our families and friends.

One site, e.g., provides "Comprehensive descriptions of public and private health care coverage options offered by every state and by the Federal Government." Another site provides a wide array of "affordable health insurance plans (Individual Health Insurance, Family Health Insurance, Self Employed Health Insurance, Small Business Group Health Insurance, HMOs, PPOs, Health Savings Accounts, Short-term Health Insurance, Dental Insurance, Life Insurance, etc.)" and allows visitors to get quotes, compare plans, and apply online. Another site provides an online "Consumer Guide for Getting and Keeping Health Insurance" for each state and the District of Columbia.