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    July 10, 2009

    Postrel advocates for an organ market by misappropriating Epoman's writings

    By Bill Peckham

    Virginia Postrel has written an article in the Atlantic touting the need for an organ market: With Functioning Kidneys for All....  I found her arguments unconvincing to the extreme and I attribute their weakness to her distorted and minimalist understanding of kidney disease and renal replacement. She is the proverbial blind woman describing the elephant by grasping only its tail.

    I'll address the many flaws in Postrel's reasoning in a future post (or I can simply reprint DSENs previous posts on the misguided notion that what we need is an organ market).

    What needs to be said first. What needs to be said now and what set my teeth on edge and clouds steaming from my ears was her caviler use of Bill "Epoman" Halcomb's words and the deceitful decision to select 14 words out of a massive body of Bill's writings:

    “Yes, it keeps us alive, but this is not what living should be like,” wrote Bill “Epoman” Halcomb, the founder of the patient community at IHateDialysis.com. (Halcomb died in March 2007, after 13 years on dialysis. He was 34.)

    Damn you. Damn you for pulling that quote and using Bill's demise to advance your uninformed opinion.

    Read Peter's tribute honoring Bill. Bill made an amazing journey. The journey from I Hate Dialysis to I Love NxStage (archive link) in public. His travelogues of that journey are on the internet for all to read.

    You can follow that journey on the Home Dialysis Central's forum from Bill's first posts to his later posts as well as his many more recent post on IHD. At very least read Bill's home more frequent dialysis training diary.

    In the end Bill understood the myth of the high dialysis mortality rate and Bill understood, what I and so many others understand: dialysis can make you feel well and it can allow you to live a normal life. The only requirement is that you get enough.

    Dialysis & CKD Blog Report 7/10

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 7/8.   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 Medicaid was reinstated for August but her surgery is tomorrow and she has no idea how she is going to pay for it. (We hope all goes well,); Tracy's friend, Renn, guest blogs while Tracy is out having surgery. She writes about her young daughter's creative writing.
    • Birdman is setting up appointments for heart tests but also to have his non-functioning transplanted pancreas and kidney removed to get ready for new transplants.
    • Hasten down the wire explains how President Obama’s approach to reforming healthcare is to obtain minimal cost growth slowdowns from insurers and providers with one hand while doling back enormous amounts of cash with the other.
    • Becky Perry has a peek into The Power of Praying for Your Adult Children by Stormie Omartian; recommends going slow the first week of home schooling and checking out a helpful link she provides to get new curriculum ideas.
    •  Life on dialysis ... and now life after my transplant! Holly speaks to another high school and shares her and another transplant recipient's talks; gets ready for her vacation and shares the transcript from an interview she gave.
    • Let us Consider One Another gripes about the US government.
    • On the Road to a Cure gives a link to the New York Times website's  Patient Voices series which  is featuring the stories of people from across the country who are affected by lupus.
    • I Am. Are you? has a must-see video on organ donation and a link to another. (Both videos brought tears to my eyes.)
    • Dialysis Postings writes about Hepatitis and the Dialysis Patient.
    • Lupus and Humor ponders whether Michael Jackson had lupus. (Probably.)
    • Bud's Ramblings notes that he hasn't seen many butterflies this summer, had a follow up CAT scan of his lungs but no results yet, and looks forward to fresh squash casserole this evening.
    • Disability Prejudice And Civil Rights Watch Alison describes several of the awful things she  experienced and observed in the psych. unit.
    • Precious Bodily Fluids shares extensive handouts from his first two lectures to his medical students.
    • Renal Fellow Network reports that transplant patients with native ADPKD kidneys who were given an immunosuppressant regimen containing the drug rapamycin (sirolimus) displayed less cyst growth than those who did not receive rapamycin;  chemists from Ohio University have succeeded in harnessing the power of urine to drive a hydrogen fuel cell (Next, a pee-powered automobile.  Fill 'er up at your nearest urinal!;
    • Uremic Frost An eight-way kidney transplant exchange sets a new record; writes about the Ohio chemists (see above blog) but also links to an article about pee-powered batteries already on the shelves in Japan (Now let's all sing "Urine the money..."); a study in the British Medical Journal shows that late referrals to nephrologists are associated with higher mortality and higher rates of admission to hospital among kidney patients, and with lack of permanent access for haemodialysis and early failure of arteriovenous fistulas, as well as decreased quality of life.  (No surprise there, but with the push for primary care docs to handle everything to avoid more expensive specialists, it's going to be hard to change.)
    • Renal tsar's blog attended a conference where it was noted that few patients in dialysis units had registered for the end-of-life information available and makes suggestions as to how to increase awareness of the program; discusses whether or not PKD patients should generally be screened for aneurysms that might rupture.
    • pkdmom2five makes an appeal for prayers for her Kentucky cousin who was severely injured in an auto accident. (We all hope for his recovery.)
    • The inner game of PKD  writes about the importance of finding a positive spin to your PKD story.
    • Nathan's PKD is frightened about his pending cystoscopy and writes a prayer to God.
    • I need a kidney gives a link to the story about the record breaking eight at one time transplant chain.
    • DailyHemo - Home Dialysis Advocates Many new videos to view here --  Procedure: Peritoneal Catheter Insertion; Young Scientists Working on Peritoneal Dialysis Research; Tips: Avoiding Peritonitis When You Have Pets;  Peritoneal Dialysis in the Ukraine; Spanish: Dialisis Atomizada; Spain: Dialysis Report; Caracteristicas Dialisis Peritoneal Automatizada; Chronic Kidney Failure: Treatment.
    • Biologically Safe Water Filters suggests that their water filter will reduce inflammation caused by poor water quality, as mentioned in a recent letter by prominent nephrologists to the US Healthcare Reform Director.
    • Encompass Network Partners has developed a Web-based application that aids clinic staff in performing foot checks and connects clinics with a network of foot-care specialists. Standardized screenings will identify those with foot ulcers who are at risk for amputation.
    • Kidney Diet Tips has an article on fish oil supplements and kidney disease.
    • Bridge of Life reports that the first clinical team from Bridge of Life-DaVita Medical Missions arrived in the Philippines, and updates on the progress of the preparations for opening the dialysis clinic in San Carlos City.

    July 08, 2009

    Dialysis & CKD Blog Report 7/8

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 7/6.   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 Bill twitters his surgery and hospital stay (see bottom left hand column); and a blog report.
    • Kamal Shah's Blog Kamal describes a humorous radio hostess whom he likes.
    • Kaply, Inc. gives us a list of her obsessions; is having a hard time sleeping and it's affecting her creativity.
    • Toastiest has a lovely photo of his sister's dog.
    • Birdman visited with family and friends over the 4th of July. 
    • Becky Perry took her child to a dental appointment that took longer than expected; enjoyed starting the new semester of home schooling her children.
    • Jack's Kidney Adventure On July 4th, Jack celebrated the US's birthday, his own birthday, and 120 days post-transplant enjoying eating almost anything he wanted; a friend notes the value and importance of volunteer work.
    • Life on dialysis ... and now life after my transplant! shares photos from the Donor Family Weekend she enjoyed; she's on the front cover of Engage magazine and has a link to the article about her. (Congratulations, Holly! You're a cover girl!)
    • On the Road to a Cure spotlights a new blogger with lupus.; Lupus Foundation of America's Webchat hosts  Dr. Andrew Frank, a dermatologist who will address Your Skin and Lupus. Wednesday afternoon, July 15, at 3 p.m. Eastern Time.
    • I Am. Are you? has a poignant story about a little boy who became an organ donor, written by his Dad.
    • Disability Prejudice And Civil Rights Watch writes a tribute to her mentor on the anniversary of his death; reports on a tragic story of child abuse, disability and prejudice.
    • Precious Bodily Fluids provides two links to articles on Acute Renal Failure in the New England Journal of Medicine.
    • Renal Fellow Network  shows an MRI depicting an example of posterior reversible encephalopathy syndrome (PRES), an increasingly-recognized consequence of malignant hypertension; writes about the study that showed that there are more HD  cardiac deaths on Mondays and Tuesdays, correlating with the 2-days without dialysis weekends. (A good reason to do Every Other Day Dialysis or more.)
    • Uremic Frost reports that the FDA just approved a diabetes drug called Exanatide, a weekly injectable drug designed to help diabetes patients keep their blood glucose under control by sending a signal to the pancreas, leading to the production of insulin. That reduces appetite and can also reduce weight; another study shows that eating vegetable can lower blood pressure. (So eat your green beans and have a salad.)
    • My Wife Has Lupus - Support for individuals whose family or friends have lupus is finding summertime difficult with kids home from school and increased financial pressures, is trying to focus on the good things but some days that's hard to do.
    • Lemonade and Kidneys has a nice photo of her kids.
    • Living with PKD Heather has decided to do serious exercise and committed to do a half marathon (Yay, Heather, you go, Girl!), and notices that her kidney cysts sometimes masquerade as abdominal muscle ripples.
    • The inner game of PKD The importance of focusing on the good, not dwelling on the bad.
    • Nathan's PKD had some blood and particulate in his urine, ultrasound of his kidneys was okay, now scheduled for a cystoscopy. (We hope all goes well.)
    • My New (Transplanted) Kidney  went to Vancouver for last preparations for the upcoming transplant and found a furnished condo near the hospital for post-surgery recovery time.
    • DailyHemo - Home Dialysis Advocates New videos: Should We Focus on Catheter Last, Instead of Fistula First?; OTC Herbal and Nutritional Supplements and Kidney Disease.
    • Biologically Safe Water Filters highlights Nephros Safe Spout, a disposable, point-of-use, single stage, ultra filter (.005 microns) that connects to the end of a standard sink faucet.  Safe Spout removes biological contaminants.
    • Renal BizBlog Renal Business Today will be hosting a free webinar to update the renal community on the latest from CROWNWeb.  It is scheduled for Thursday, July 30, at 1 pm EDT. 

    July 06, 2009

    Dialysis & CKD Blog Report 7/5

    By Miriam Lippel Blum

    Bill's surgery is today.  There will be Twitter updates regarding his status at the bottom of the left hand column.  We wish him well and hope he is up and around soon.  Here are the CKD related blogs updated since my update on 7/3.   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 reports on his medical situation and will be Twittering further updates. (We're rooting for you, Bill!)
    • Kamal Shah's Blog Kamal wins the "Most Thoughtful Posts which also make the reader think award" from a fellow blogger (We would agree with that. Congratulations, Kamal!); protests a statue being erected by a politician to honor herself when the money would be better spent aiding her people.
    • Kaply, Inc. Tracy's glasses are broken and she found out the state may take away her Medicaid and food stamps; bureaucratic hassles await her on Monday, she takes some Ativan to take the edge off; is very scared about how dependent on others she will be post-surgery even though she has friends who care and want to help, and is cleaning up her apartment in preparation.
    • Toastiest took his cat to the vet and after two days in hospital is doing much better; has photos of the most handsome dog in the world.
    • Hasten down the wire critiques corporate media that give the message - Don't risk anything because you’re almost certain to fail - thereby, destroying personal initiative, and the creative endeavors that might result.  People are trapped in stifling jobs merely to keep health insurance.(Right on the money.  That's why we need national health care.)
    • The Life of a 20-Something With Lupus had to deal with an unpleasant person at the lab who gave her a hard time for no good reason.(I hate it when medical people make one's life even more difficult and treat one with disrespect.); felt nauseated all day, is very stressed out, and sees a woman do something weird with broccoli at the grocery store.
    • Becky Perry reviews Every Man's Bible; hasn't been feeling very well since she went on the PD cycler so she is going back to manual exchanges;  review of Stretch 4 Life an exercise manual and DVD by Lori Walter.
    • Life on dialysis ... and now life after my transplant! had fun on her solo train ride, the donor event she attended was very emotional especially the ceremony of recognition of donor families.  Many stories  moved her to tears.
    • Chronic Chick Talk needs a new bed, her current one causes pain; inspirational quotes from Helen Keller (These are really great!); loves watching the hummingbirds feed from the glass feeder she has, especially when she is not feeling so well.
    •  Bud's Ramblings Bud explains the history of Independence Day; enjoyed dinner and the fireworks at his daughter's home, is concerned with the pain she has in her ribcage.
    • Disability Prejudice And Civil Rights Watch describes some of the flashbacks from her traumas in the hospital.
    • Renal Fellow Network provides links to two very interesting web sites for those involved in the study of mouse as a model organism for the study of kidney disease and kidney development; discusses the high mortality rate of US patients compared to other developed countries.(Shameful, isn't it?); using an equation he describes, one can make a compelling case that there is a shortage of nephrologists in the U.S. 
    • Uremic Frost a music video parody of Soulja Boy called "Pass a Kidney Stone"; and another video from RSN called "Seymour Jones and the Temple of Chronic Kidney Disease,"
    • Neophron's Senescence took the day off and watched Wimbledon.
    • Mid-life ramblings counts her blessings while watching her daughter sleep.
    • The Ballad of Billy The Kidney thinks about the importance of humor in recovery of renal patients and tells a really bald joke (Oops, I meant bad.); writes about Steve Jobs, liver transplant recipient and CEO of Apple, Inc., and gives links to information about him.
    • The inner game of PKD writes about the impact of self-perception on a PKD patient.
    • DailyHemo - Home Dialysis Advocates A whole crop of funny video parodies: Pass A Kidney Stone (Soulja Boy parody); Seymour Jones and the Temple of Chronic Kidney Disease; Like A Kidney Stone; Why Can't I Pee.

    July 05, 2009

    Tweeting health updates

    By Bill Peckham

    I joined twitter in March and haven't really taken to it but I've seen its utility. It's another way to say something to anyone who is interested (like blogging only shorter and it can be done through phones as primitive as mine). I tried some travel and gardening updates, some tweets, but ran out of energy sometime in April and Twitter was one of the first things to be cast aside.

    Now it's back. I'll use Twitter to pass on updates over the next couple of days of medical care. My Twitter feed is embedded in the left hand column of my blog and tweets simultaneously update my Facebook status - just as most blog posts are automatically reposted to Facebook (this one wasn't, not sure why). If you're reading this at Billpeckham.com in July 2009 - look to the bottom of the left column for updates and news.

    Kidney2 Since my last post my medical situation is about the same - tomorrow the plan is to check into Swedish hospital about 1PM and have my left native kidney removed - it's the one being measured in the picture to the right. In the image the tumor is at the bottom of the kidney - the green line is going right through it. There is a darker circle off to left but here dark means less mass - white is solid. That darker circle is a cyst. Like the cyst you might see in someone with PKD, the difference is that in my case it is acquired and is something that just effects my kidneys vs PKD which is hereditary and can impact other areas and organs. You can see there are cysts on the right kidney too but they're not much of a problem (unless they rupture or grow too large).

    After the surgery my Mom is here in Seattle determined to take care of me (or pay me back) for my caregiving for her last year. A turkey will be cooked. Debbie, who puts my Mom up when she is in town and is the friend who drove with me to Chicago last year, will be sitting with my Mom and will tweet my progress. It will be her first experience with tweeting. I'm sure it's going to be great but I take no responsibility for content until further notice.

    I've been very touched by all the expressions of support that I have received. I appreciate all the shoulders that have been offered; it is a comfort to know people are there. I haven't wanted to spend time thinking or talking about illness and the possibilities, my way to deal with illness has always been to get absorbed in the moment. That's left a lot of unanswered emails and notes. If I don't respond immediately things can get lost quickly. My inbox has never been empty, but lately I've really let things go.

    Sorry for all that but I'm hopeful that I'll be back to my normal in a matter of weeks. Back to tracking dialysis industry news and trends, in advocacy, reimbursement, politics and the provision of renal replacement (maybe I should edit the DSEN tag line?). And back to enjoying Seattle's all too short summer.

    July 03, 2009

    Dialysis & CKD Blog Report 7/3

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 6/30.   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 Bill reports on how Singapore dialysis units are preparing for H1N1, hopes the US will follow suit; Peter writes a moving tribute to Kelli, a nurse, who worked with him and later, dialyzed by his side.  She passed away unexpectedly and became an organ donor continuing her legacy of life and giving. (Our hearts go out to you and Kelli's family on this great loss.)
    • Kaply, Inc. Tracy''s arm pain increases, surgery isn't yet scheduled, wants to hurt upstairs neighbors; Tracy does some yelling at the personnel at the doctors office; surgery now scheduled for July 10 (Sometimes a little yelling gets things accomplished, I guess.), got a card she liked,
    • Hasten down the wire comments on the story about the Washington Post offering health-care lobbyists access to members of the Obama administration, Congress, and Washington Post editorial staff for fees ranging from $25,000 - $250,000. (This is what we call health-care reform?)
    • The Life of a 20-Something With Lupus celebrates Canada Day going out with her Mom.
    • Becky Perry makes smoothies with frozen strawberries, orange juice and banana; has her lesson planning sheet available for downloading; a book peek into Be Hopeful by Warren Wiersbe; lists five blessings in her life; and a recipe for Skillet Enchiladas that her family loves.
    • Jack's Kidney Adventure Jack gets a talking pocket watch to remind him to take his transplant meds on time; meets a former Fresenius social worker and they talk "shop," he enjoyed chatting with someone who understood renal issues.
    • Life on dialysis ... and now life after my transplant! is looking into putting on a really large fund raising event for her organ donation campaign; gives a successful talk to school students, and shares some photos and a link to the magazine cover she is featured on.(Great picture, Holly!)
    • On the Road to a Cure has important information about how lupus can affect your skin.
    • The Daily Dialysis Bonni feels she is not adjusting to dialysis as well as her husband is, his labs are still not right and he feels fatigued.
    • I Am. Are you? Morgan D'Organ attends a birthday party.
    • Transplant Alliance A medical student looks for a thesis topic on transplantation; a link to a video about a special hi-tech container for transporting kidneys that helps keep them in better shape until transplant.
    • Chronic Chick Talk has a photo of flowers.
    • Lupus and Humor provides a link to a great resource for finding a healthy sunscreen. (Important for those with lupus and everyone else.)
    • Bud's Ramblings He buys gum for a friend, finds a missing knife, and plans to see a doctor about his sinus coughing issue.
    • Disability Prejudice And Civil Rights Watch Alison points out fabrications in her medical records made by psychiatric personnel; mocks the name change of a governmental department as it really is meaningless; makes the case that medical professionals shouldn't talk about "recovery" from mental illness until they stop using shame,blame, threats and force with people; links to an article about psychiatrists lamenting the diminished use of psychotherapy because it is a useful therapy.
    • Precious Bodily Fluids shares a link to a cool article on aphorisms by Hippocrates;  a study disputes the July phenomenon (rise in mortality in the month medical interns start their rotations); a funny video made by medical students about diagnosing Wenkebach syndromes (problems with the heart's electrical conduction systems.)
    • Renal Fellow Network gives examples from the same Hippocrates article mentioned above; a paper in the NEJM presents a major breakthrough in understanding the pathogenesis of membranous nephropathy and nephrotic syndrome. (Way beyond me but good for the medically astute.)
    • Uremic Frost reports the FDA approved a new iron drug, Feraheme, that takes much less time than current therapies (such as Venofer or Ferrlecit); a study shows that renal cell carcinoma lesions are more likely to be central in location; a study shows that early blocking of the renin-angiotensin system in Type 1 diabetics does not delay nephropathy; wishes Happy Birthday to a 100-year old dialyzor in Michigan (Amazing and wonderful to hear about!); the same music video as mentioned in Precious Bodily Fluids above; link to a podcast by Kidney International that  focuses on a possible genetic link between African Americans and CKD.
    • Neophron's Senescence has a lot of books to read.
    • pkdmom2five has a day full of doctor appointments; shares a photo and writes about the dream house she would like to live in.
    • Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to a mindmap showing the structure of the kidney; a graphic of a brain with atherosclerosis.
    • Nathan's PKD His echocardiogram was okay but his doctor wants to do a stress test, too, since he gets out of breath with exertion.
    •  My Damn Kidneys Here's a link to his new blog My New (Transplanted) Kidney
    • Writings along the cave walls - Ashbat's Lair has a M-W-F dialysis shift and hates it, but does like Sat. off.
    • Biologically Safe Water Filters Nephros received FDA approval for the Dual Stage Ultrafilters to be used to filter biological contaminants from water and bicarbonate concentrate used in hemodialysis procedures.  This filter will help dialysis providers address microbial and endotoxin contamination of water and dialysate concentrate.
    • Kidney Community Emergency Response "Win Big With Quality: Raising ESRD Care to a New Level" is the theme for.the Florida ESRD Network's 2009 Forum, Nov. 15-17  It will focus on CMS goals of protecting patient safety, enhancing ongoing quality improvement, and improving patients’ experience of dialysis care.
    • Bridge of Life  A dialysis center that will cater especially to indigent patients will soon open at the Pangasinan Provincial Hospital in Barangay Bolingit in San Carlos City, in the Philippines.

    July 02, 2009

    A Tribute to Kelli

    By Peter Laird, MD

    Kelli Kelli Cussimonio is a person that few knew, but for those that did know her, she always had a special place in our hearts.  Kelli was not only a fellow dialysis patient who often sat next to me at the unit, she was also the most special nurse I was ever privileged to work with.  I didn’t know she even had renal disease until I went to do my fistula surgery and found out the Kelli had just completed hers.  We spent the next few months comparing our “thrills” as our fistulas matured and compared notes on our declining renal function.

    Kelli started her venture in dialysis a couple of months before I did but was able to continue working taking only the amount of time off needed to dialyze three times a week.  I soon joined her in the unit and my most cherished days were when I was able to sit beside her and talk about the “good old days” when Kelli was my nurse.  In this case, the good old days really were when it came to Kelli. My clinic was always busy and hectic and many nurses simply didn’t want to work with me due to my heavy case load.  Yet Kelli was always willing to take up the tasks at hand without any complaint and always with a soft spoken smile.

    Over time, the Lord blessed both Kelli and I with what I came to call my “Kelli days.”  For the last two years that we worked together, every time Kelli drew the “short straw” to work with me for that day, I had so many no shows that these days were always peaceful, quiet and a day that we could both catch up on our duties.  I didn’t realize until a few months ago that Kelli never had easy days unless she was working with me as well.  I just figured God was being kind to Kelli and not me since I certainly did not have the calm disposition that we all knew Kelli had.  As our kidney function declined and as our energy likewise declined, having a “Kelli Day” became a quite special gift to both of us.

    I have never heard Kelli complain or be cross with anyone in the over 10 years that I worked with her and even more so as she sat near me in her own dialysis chair.  This is even more remarkable in that Kelli should have had the right to complain about many things, not the least of which was her failing health.  Yet in all of this, and all of her duties at work and as a single parent to her beautiful adopted daughter, Kelli’s determination and inner peace was always a source of encouragement to me and others as I went through my own trials at work and with my own renal disease.  

    Kelli recently passed away after a brief illness caused by an internal brain hemorrhage on June 30, 2009.  It was a short life by usual standards cut off in the prime of her life.  She was a loving mother, daughter, and sister.  Kelli always gave her all to those that knew her.  Kelli never wrote any books, nor was she known to those outside of her immediate circle of family and friends.  

    Nevertheless, Kelli is a person that always went out of her way to give of herself to her family and her friends.  Kelli gave the gift of a loving life to a  young girl who she took into her home and raised in an exceptional manner.  It was always a joy to see them together. It had been my prayer nearly every day for the last two years that Kelli would be able to raise this child through high school and beyond.  I was greatly saddened that Kelli will not be able to see the fruits of her labors with this child, yet then it occurred to me that the legacy that this soft spoken woman left for her child shall forever be with her.  I know of no other person that showed such kindness, meekness and patience thus serving as the best example of a genuine Christian demeanor that I have ever encountered in this life.  The altruism of Jesus shall be the manner in which I think of Kelli, always giving of herself and not asking for anything in return.

    Kelli likewise wanted more than anything else to be able to see her daughter grow into adulthood.  In such, Kelli has been on the renal transplant list for over two years.  She diligently endured all of the many tests that are required by Kaiser and the UCLA transplant teams.  Kelli took her medicines and did everything she could to live her life to continue giving to her daughter, her family and her friends.  Yet tragically, a little over two weeks ago while visiting her sister to see the newest life brought into their family, she suffered what turned out to be a terminal brain hemorrhage.  Instead of becoming a kidney transplant recipient, Kelli once again gave of herself another gift of life by becoming an organ donor when she no longer needed this earthly body.

    I will miss Kelli while here on this side of eternity.  I cherish all of the time that I spent with her at work and even more so as my fellow kidney dialyzor.  Yet I will never forget the example she gave living and always giving of herself.  It is my hope that her story may compel many to give the gift of life likewise as this quiet woman did to those that she never knew. Knowing Kelli, this would give her a big smile knowing that her sacrifice helped others, not only of her own flesh, but also those that may be motivated by her example.

    May you rest in peace always Kelli.  I miss you and will never forget you.

    Peter

    June 30, 2009

    Singapore dialysis units take H1N1 seriously

    By Bill Peckham

    In Singapore dialysis units are implementing social distancing measures to limit the spread of H1N1 flu. In the photo accompanying the Channel News Asia story it appears that people - both patients and staff - are wearing surgical masks which is another non pharmaceutical intervention that could be used to limit the spread of the pandemic flu virus.

    US dialysis providers should be discussing these and other NPIs to prepare for what looks to be a very challenging flu season just three short months away.

    Dialysis & CKD Blog Report 6/30

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 6/27.   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 totally addicted to FaceBook despite the irrelevant information he gets on it.(I confess to taking too many of those silly quizzes. )
    • Toastiest His 13-year old cat is sick, wonders if this may be the end and if delaying taking the cat to the emergency vet is irresponsible.
    • Hasten down the wire critiques the NYT coverage of Michael Jackson's death.
    • Becky Perry is feeling low and vulnerable, wonders whether it's okay to reveal that side of her in her blog (Yes, it's okay and we all feel that way sometimes.); posts a  peek into the first chapter of a book by Linda Massey, How To Raise a Modern Day Joseph; reviews Mom Needs Chocolate by Debora M. Coty.(I'm not a Mom but I definitely need chocolate, too.)
    • The Adventures of Stacy Without An E Stacy's sister, Amy, comes to visit which cheers him up immensely and he shows her the town. (Sisters are indeed powerful.)
    • Life on dialysis ... and now life after my transplant! is excited about taking her first train trip by herself to a donor family event.
    • On the Road to a Cure Human Genome Sciences (HGS) reports continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment.
    • The Daily Dialysis is a new blog.  Bonni, caregiver to husband, Mark, who has just started in-center HD, is feeling cautiously optimistic as he continues to feel better, hopes he can get an earlier time slot as they don't get home till well after 11pm.
    • I Am. Are you? has photos from a Donate Life Illinois event at a Kenny Chesney concert.
    • Chronic Chick Talk posts a Madonna video for Music Monday.
    • Lupus and Humor finally  signs up to take a long desired class on writing one-(wo)man shows, because "if you don't learn anything else from having a stroke and kidney failure, you learn that you only live once." (Bravo, Carla!)
    • Bud's Ramblings did well on dialysis yesterday, is now enjoying watching the birds from his front porch.
    • Disability Prejudice And Civil Rights Watch Alison sharply critiques the hospital that violated her civil rights and abused her in multiple ways; Catholic hospitals told her being a lesbian was a mental illness; discusses the excuses professionals and family members make to justify abusive behavior towards people labeled with psychiatric problem; wakes up from a nightmare and reflects on the traumas and injustice in her town and the world; decries the fact that when  people are involuntarily detained in an ER in Virginia no one asks if they have any pets at home that might need care. (That is a very important problem that should be addressed.  Maybe the Humane Society or the ASPCA can help lobby for this to be changed.)
    • Precious Bodily Fluids describes a patient who missed three weeks of dialysis during the month; summarizes the history of dietary sugar and fructose as presented in The Sugar Fix, chapter 2; presents his philosophy of consult nephrology; links to a page with excellent tips for doing searches on PubMed.
    • Renal Fellow Network describes the importance of Acanthocytes (ring-shaped Red Blood Cells (RBC) with blebs of membrane coming off--sometimes described as RBCs with "Mickey Mouse ears") as the best predictor of glomerular disease compared to all other dysmorphic RBC types;  the problem with using eosinophiluria to diagnose Acute Interstitial Nephritis.
    • Uremic Frost reports a horrendous incident wherein a cab driver abandons a frail,  elderly dialysis patient by the side of the road in 97 degree weather; links to a very eye-opening article about DaVita's strong arm tactics to destroy competition and protect its profits;  a scary video about the kidney stones in Chinese children who drank melamine tainted milk.
    • Renal tsar's blog  has a link to the business rules for the new CKD domain of the Quality and Outcomes Framework that have now been published.
    • Neophron's Senescence loves his old Porsche; links to a presentation that makes a case for single payer insurance,
    • Lemonade and Kidneys Her lab results show another drastic drop in kidney function, she's glad she has disability insurance.
    • Mid-life ramblings Her daughter is visiting from Utah and family dinners are planned, dialysis access is progressing well, looks forward to getting her NxStage home.
    • The inner game of PKD discusses evaluating and confronting fears. (Very relevant and practical advice here.)
    • Mushroom's Blog has a lovely photo of Mushroom holding his grandchildren.
    • Nephrosphere links to a report that Cinacalcet might be associated with leukocytoclastic vasculitis.
    • My Damn Kidneys Transplant is scheduled for July 27 and they are gearing up their support network, will be starting a new blog "My New (Transplanted) Kidney Journey. (We wish you the best and hope for more good news in your new blog.)
    • DailyHemo - Home Dialysis Advocates New Videos: Bundling for ESRD Patients; Nephrology Practice in an Economic Downturn.
    • Berns on Nephrology Will bundling create disincentives for home hemodialysis?
    • Encompass Network Partners has gotten good press and wants contact from their readers.
    • Renal BizBlog The renal community could get its first look at the ESRD bundled payment system in July, according to information on a government Web site that lists federal regulatory information.
    • The Renal Unit Latest renal tweets, news, and blogs.

    MIRIAM'S WEBSURFING FIND: Tiffany Christensen is a two-time lung transplant recipient who has struggled with chronic illness all of her life.  She has a blog called "sick girl speaks" that recently spawned a book.  But what I happened upon was a blog post by her entitled "The Ten Opportunities of Illness."

    It provided a perspective shift that I appreciated and thought worthy of sharing.  Here's a quote:

     While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.

    She then goes on to list what she considers the "gifts" that an illness experience can bring and comments on each one.  I found it uplifting and a different way of looking at and coping with my challenges.  I hope you will find it so, as well.


    June 27, 2009

    Dialysis & CKD Blog Report 6/27

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 6/24.   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 has difficulty determining dry weight and gets hypotensive; hails two decisions by the Indian government.
    • Kaply, Inc. Tracy got her Kindle and explains all its benefits;  is already sick of not being able to use her arm and anticipates more difficulties.
    • The Life of a 20-Something With Lupus The city is hot and there's a garbage strike but her lab values are great; talks about the impact Michael Jackson's life and death had on her. 
    • Becky Perry finds You Tube to be a source for beginning drum instruction for her son; encourages participation in "Friday Felicities" where you count your blessings.
    • Life on dialysis ... and now life after my transplant! is 8 months post-transplant, received awards, passed her dissertation and shares photos from this month; has a splendid time at a concert.
    • On the Road to a Cure has an article about designing a social life around the limits of lupus (This could apply to any chronic disease.)
    • I Am. Are you? reminds that the NKF-Illinois Gift Of Life Walk is June 28th.
    • Transplant Alliance celebrates a "Lung-versary" next week and looks for items with green ribbons; an article about Canada's first live kidney swap -- four transplants at once.
    • Life on Dialysis The monsoons are here and he plans outdoor treks.
    • Chronic Chick Talk bought some tomato and green pepper plants to put in her garden; gives a link to stylish maternity clothes; says goodbye to Michael Jackson, notes that he had lupus and wonders if that contributed to his cardiac arrest; she finds and shares a link to online coupons for lots of items.
    • Bud's Ramblings shares family photos.
    • Disability Prejudice And Civil Rights Watch notes that a psych hospital in Philadelphia has safety violations after a for-profit company takes it over; deals with small-town gossip by creating rumors and gossip about herself.
    • Precious Bodily Fluids links to a blog that containing nothing but the most hilarious journal articles from PubMed.
    • Renal Fellow Network a book makes the case that Tiny Tim (from A Christmas Carol) had Renal Tubular Acidosis; there is evidence showing that  terlipressin can be a treatment for Hepatorenal Syndrome; a quick review of of what different types of urine crystals (causing nephrolithiasis) look like under the microscope.
    • Uremic Frost a bear visits a dialysis center in Ohio; the difficulties of a diabetic renal diet; a study showing that contrast induced nephropathy is not benign and has long-term effects; DaVita opens its 1500th outpatient dialysis clinic in Gulf Shores, Alabama; a study concludes that the risk of hospitalization and death with pneumonia is greater at lower eGFRs, especially in younger adults. This association may contribute to excess mortality in people with CKD; scientists find that the genes of the Goby fish may help them locate genes in humans that control high blood pressure.
    • pkdmom2five reminisces about her Granny; couldn't find assistance from anyone at Walmart; and a cute photo of her son.
    • Lemonade and Kidneys announces a date for a PKD fundraiser, October 2, 2009.
    • The Ballad of Billy The Kidney  discusses the rise of "good Samaritan" websites permitting those waiting for kidney transplants to solicit donations, has grave reservations about the concept; criticizes the US government for focusing money and attention on the switch to digital television instead of universal health care issues (It certainly does show skewed up values, IMO, too.); critiques an article about a woman who pays a man for his kidney and the growing "medical Imperialism."
    • The inner game of PKD a new blog to us written by Richard Perl who seeks to help PKD sufferers navigate the inner, psychological journey that chronic illness brings. His latest post is about minimizing the power of the “negative imprint”(old bad memories that stick with you).
    • Unfiltered Hope is disappointed that two potential donors turn out not to match her husband but continues to hope the right person will be found.
    • Biologically Safe Water Filters New special considerations regarding dialysate quality for acute hemodialysis have been issued by ANSI/AAMI
    • Renal BizBlog Details some of the changes to the ESRD program in the House Healhcare Reform Proposal, and a link to the entire proposal.
    • The Renal Unit Latest renal tweets, news, and blogs.

    June 24, 2009

    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 FINDCarla 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.

    June 21, 2009

    Dialysis & CKD Blog Report 6/21

    By Miriam Lippel Blum

    Happy Father's Day to my Dad and to all loving fathers out there.  Here are the CKD related blogs updated since my update on 6/18.   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 appalled at a urologist's ignorance of the advances in HD;  educates another doctor about the impact HD may have on the antibiotic prescribed. (You're right, Kamal, one should never  assume doctors know everything about HD.  Always remind them and ask if meds will dialyze out.)
    • Kaply, Inc. doesn't gamble; discusses her friend's blog stalker;  a silly dinosaur video; and a memorial to the Puppy Monster.
    • poetry on dialysis continued has a new poem "Short Thoughts."
    • Toastiest has a video of his dog in chewing bliss; is extremely depressed and lonely.
    • Hasten down the wire is appalled at the media "coverage" and privacy invasion of Steve Jobs' liver transplant.
    • Becky Perry lists four more things that make her happy; awaits her transplant evaluation with nervous anticipation.
    • CHRONIC POSITIVITY - Life with Polycystic Kidney Disease it took 2 months but his sister is finally home post-transplant and is doing much better.
    • Life on dialysis ... and now life after my transplant! still has her fistula, is very busy planning talks with students; details her calendered events through August; encourages people to get their local cinemas to promote organ donation during the run of "My Sister's Keeper."
    • Let us Consider One Another Dan thanks and updates friends and loved ones on his condition, now uses an electric scooter to get around.
    • I Am. Are you? Donate Life Illinois and their mascot, Morgan D'Organ have a registration event at a baseball game.(Cute mascot!)
    • Transplant Alliance is excited to feel well enough post-transplant to participate in a Kidney Walk. (You go, Girl!)
    • Bud's Ramblings shares happy family photos from a train ride; photos of gem panning on Raccoon Mountain.(I've panned for gold in Colorado and even found a small nugget once.)
    • Precious Bodily Fluids In preparation for a visit by Myles Wolf, MD, Joel gives a quick review of FGF-23, or fibroblast growth factor-23, a newly discovered molecule which regulates the phosphorous in the body; and grumbles about the iPhone ATT relationship.
    • Renal Fellow Network the importance of AAMI  water quality standards  within dialysis units;  a report on the development of a potentially useful dipstick test able to detect urinary Kim-1, a promising new biomarker for acute kidney injury; a simplified Winter's formula for rapid Arterial Blood Gases analysis.
    • Uremic Frost reports a study revealed that almost half of older dialysis patients will die waiting for a transplant;  an NFL rookie needs to retire due to kidney disease; a very funny music video "Save a  Kidney, Drink a Dasani" ; and a study showing that in order to get the best blood pressure benefit from the Mediterranean diet: high fruit and vegetable consumption must be coupled with less than 15 grams/day of olive oil.
    •  Neophron's Senescence recommends and links to a NYT article on Obama and the obstacles to Universal Coverage.
    • Kidney Notes - Exploring the Intersection of Medicine and Technology has a short clip of a baby in the middle of the night; comments on timing of the announcement of Steve Jobs' liver transplant; and links to Renal Fellow Network's post "Why this catheter doesn't work?"
    • Lemonade and Kidneys is exhausted from advancing PKD and it is impacting home and work life.
    •  Mid-life ramblings needs cataract removal and feels old; expresses gratitude to those whom have quietly helped her; is grateful for technology that allows access to an inspirational talk from 1974. 
    • My Chronic Kidney Disease is looking into two alternative therapies. (Be careful. Take a look at Kamal Shah's blog posts here  and  here. He lives in India.)
    • Mushroom's Blog has photos from Trevor's graduation from UCSB.
    • Eating Well on Dialysis - Delicious low-sodium, low-potassium, low-phosphorus food for dialysis patients has a recipe for Balsamic Pork with Shallots.
    • Unfiltered Hope discusses the organ donor shortage and the perils of the national waiting list.
    • Kidney Community Emergency Response reports on the work of the Medical Reserve Corps.
    • The Renal Unit Latest renal tweets, blogs. and news.

    June 18, 2009

    Dialysis & CKD Blog Report 6/18

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 6/15.   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 excited that Fresenius plans to get more people onto home hemo in India.
    • Kaply, Inc. Tracy finds out that bundling services lowers her internet cable bill. (Did they learn this from Medicare, you think?); has dialysis day off, plans to sleep in.
    • Drinking my way through Trader Joe's Wine reviews Estola Reserva La Mancha which she enjoys with Lavash pizza. (Yum!) 
    • Toastiest posts a video in which he describes that he feels exhausted and despondent.(Maybe it's time to go on dialysis.)
    • Hasten down the wire Michael's fistula failed and he got a tunneled catheter, now he has to start all over getting his fistula used to large needles again; writes about Risen and Lichtblau's report that the NSA is believed to have overstepped its legal bounds in reviewing e-mails.
    • Becky Perry had a good lab report at the doctors; book review of Never the Bride; finds that e-mealz helps her plan her weekly menus; she wants suggestions on how to use protein powder in baking (Google it, Becky.  There a gazillion recipes on the web); how she chooses homeschooling topics; gives suggestions on how to encourage people with chronic illness.
    •  Life on dialysis ... and now life after my transplant! Holly meets with the Dept. for Children's Schools and Families to promote organ donation education in schools; has eight movie theaters committed to making organ donation pamphlets  available during the run of "My Sister's Keeper."
    • On the Road to a Cure announces a Walk for Lupus Now event in Minneapolis, June 21; celebrates its second year, has done 300 posts (Congratulations, Lupus Foundation, for reaching out to so many.)
    • Transplant Alliance has transplant statistics from the  London Health Sciences Centre.
    • Kevin’s Blog Kevin plays in a golf tournament and notes how much more energy he has since his transplant.
    • Disability Prejudice And Civil Rights Watch Subtle Cues You Might Be a Good Mental Health Professional; acknowledges his mother's 86th birthday with Jackson Browne video ""I'll do Anything" and a Muslim song about honoring your mother; has trouble getting his transplant meds in a timely manner while in the hospital, everyone, including doctors, is uncooperative. (I understand, trying to get insulin when you need it is a hassle, too.); "Peace Train" by Cat Stevens video; expresses frustration at the rejection  experienced at church nd elsewhere.
    • Precious Bodily Fluids wants and then gets his iPhone software.
    • Renal Fellow Network shares a study showing serum free light chains were found to be much more sensitive than either serum or urine immunofixation, and were successful in identifying several patients with AL amyloidosis who had undetectable paraproteins by SPEP & UPEP. (Way beyond my science level but hopefully not to the doctors who read this blog.); discusses the problem of fibrin sheaths clogging tunneled catheters.
    • Uremic Frost A study shows renal stenting not helpful in renal stenosis; Dr Franz Messerli calls thiazides a lousy drug and disputes their effectiveness; Simon was interviewed about CKD and related issues. It will air 7 am this Sunday morning June 21st on 106.7 FM in NY... or it can be heard here.
    • Renal tsar's blog discusses a study that identifies systematic failings in the management of Acute Kidney Injury; writes about the importance and implications of an NHS report on developing funding for high quality renal care service.
    • Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish  ) His unit gets a new TV, finally!
    • Free range fish sticks has closed down his blog for the time being. (God bless. We wish you well and will miss sharing your story.)
    • Neophron's Senescence notes the passing of 87 year old, Roger "Bill" Terry, Tuskegee Airman.
    • pkdmom2five lets her husband haggle with a vacuum cleaner salesman, daughter is healing from MRSA but still in hospital, hoping she will be out for Father's Day.
    • My Wife Has Lupus - Support for individuals whose family or friends have lupus His poll shows the majority of his readers have lupus, contemplates changing the blog name to appeal to all with lupus.
    • Chronicals of the PD Warrior links to an article about freeing Iran.
    • Living with PKD posts on the trials of potty training a 2-year old, worries whether baby's constipation is related to PKD, it's not.
    • Nathan's PKD after being told it would be unlikely he would father a child, Nathan and Jenny are pregnant and expect to give birth in Dec. 2009. (Congratulations!  We wish you both joy, an easy delivery, and a healthy baby.)
    • Unfiltered Hope goes tomorrow for first blood test for antibody issues in the pre-transplant workup.
    • DailyHemo - Home Dialysis Advocates New Video: Do CKD and ESRD Patients Understand Their Disease --Jeffrey S. Berns, MD, from the University of Pennsylvania School of Medicine, discusses a study that points to alarming gaps in the knowledge of CKD and ESRD patients, particularly comments on mortality contributed by tunneled dialysis-catheter use.
    • Berns on Nephrology Video blog entry on using dipyridamole plus aspirin in dialysis patients with newly placed AV grafts.
    • Biologically Safe Water Filters a Miami hospital has contamination and deaths from pseudomonas, use of Nephros Dual Stage Ultrafilters  would have been a less expensive fix and a proactive approach.
    • Kidney Community Emergency Response Detailed emergency preparation info. for hurricane season.
    • Renal BizBlog Obama takes aim at patent protections that drive up drug costs and make generic equivalents unavailable.
    • The Renal Unit Latest renal tweets, news, and blogs.

    June 15, 2009

    Dialysis & CKD Blog Report 6/15

    By Miriam Lippel Blum

    Here are the CKD related blogs updated since my update on 6/12.   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 Peter learns he is training for home HD in the same unit and with the same nurse that trained Bill "Epoman" Halcomb.  He pays tribute to the the late, creator of the I Hate Dialysis website and forum.  (Epoman was my hero when I first started to learn about HHD and NxStage.  I loved the IHD site.)
    • Kamal Shah's Blog Exhausted by a hard day at work, Kamal is refreshed by a swim in the rain; shares what he just learned about the home HD programs in South East Asia and can have nocturnal dialysis arranged so he can visit Phuket.
    • Kaply, Inc. Tracy's blog friends surprise her with a Kindle, she feels loved. (That kind of support and friendship helps make life worth living.)
    • Toastiest His doctor tells him anemia is getting worse; and a photo of his dog.
    •  The Adventures of Stacy Without An E Stacy mourns the death of a beloved uncle, regrets not having given him more support when he, too, went on dialysis; challenges readers to post sentences with 26 words alphabetically;  is disgusted  by the state of the bathroom in the dialysis unit. (Yuck to the max!  Stacy, it's time to take photos  and report it to the Dept of Health, or the  Medicare Network, or whomever in  CA oversees dialysis units.)
    • Jack's Kidney Adventure Jack's post-transplant lab visits are becoming routine while he is actively engaged in living his life to the fullest with work, scenic driving, and friends.
    • Life on dialysis ... and now life after my transplant! updates her very happy, busy week, and she got black and blue from multiple attempts at blood draws.
    •  On the Road to a Cure has a video of Dr. Bruce Richardson discussing his hypothesis as to why men develop lupus.
    • Transplant Alliance has had a difficult month with lots of symptoms, can't wait for tx doctor appointment.
    •  Bud's Ramblings enjoyed his Forum reunion.
    • Disability Prejudice And Civil Rights Watch
    • Precious Bodily Fluids is writing abstracts for ASN, has a great data set on geriatric patients in a structured CKD clinic, needs to define stable renal function.
    • Renal Fellow Network Macroglossia (enlarged tongue) is a complication of amyloidosis; a trick for diagnosing ethylene glycol toxicity; a case of murder by ethylene glycol poisoning turns out instead to be a rare genetic disorder.(This sounds like a case out of Law & Order, or House.)
    • Uremic Frost Alonzo Mourning helps get an Access to Care Act passed in Florida that will let patients under age 65 with CKD5 obtain Medigap insurance if they already qualify for Medicare. (Yay, Florida and Bravo, Alonzo!); an amusing and educational music video called "Nephron's Paradise."; and 10 ways to protect your kidneys
    •  Neophron's Senescence posts a photo and information about the airplane that sunk 3 Japanese carriers in the Battle of Midway; a Happy 45th Birthday post to his son, John.
    • My Wife Has Lupus - Support for individuals whose family or friends have lupus updates the look of his blog.
    • My Chronic Kidney Disease has eliminated wheat from his diet, his research has led him to think of the body (including the mind) as a single organ and that symptoms in any part affect all.
    • Encompass Network Partners What leg ischemia is and how to know if you have it.
    • Kidney Diet Tips has an article about kidneys and Vitamin D.
    • Bridge of Life shares photos from a DaVita Medical Mission to a children's HD unit in Guatemala City.
    • History of Nephrology History continues with an article about William Koff's first hemo machine in 1945 (Take a look at that monster as compared to what we have today!); and the unsung story of early peritoneal dialysis.
    • Writings along the cave walls - Ashbat's Lair describes difficult customers at her workplace.
    • Renal PatientView Blog announces that it has reached 10, 500 registrants.
    • The Renal Unit Latest renal tweets, news, and blogs.

    Bill “Epoman” Halcomb and Rita

    By Peter Laird, MD

    Epoman_Epokid
    photo by Trina Halcomb

    Sitting on my “throne” here at the Kaiser Permanente Sunset Home Dialysis training room, the topic of other people with renal disease who write on a blog came up. Rita my training nurse, stated she had one other patient who wrote on a website as well. She couldn’t recall the title exactly but it was “I hate” something or other. Being a fan of I Hate Dialysis (IHD), I immediately stated, “you mean you trained Bill “Epoman” Halcomb right here in this chair?” Of which Rita immediately stated, "yeah that’s it."

    I never met Epoman before his much untimely death, but like so many others, Bill Halcomb has touched my life by the legacy he left all renal disease patients on IHD. I had only seen a couple of the pictures of Epoman on IHD, and only briefly reviewed some of the tributes to Bill Halcomb after his death in 2007 at the age of 35, but sitting in the same chair where he had trained touched me to learn more of this life cut short, yet he still lives in the minds and memories of those that knew him. Interestingly, the most touching tributes to Epoman may have come from those that joined IHD after his death:

    monrein
    I'm sitting here bawling my eyes out for someone I never met, not even in cyber-space as he left before I found IHD, but someone for whom I am profoundly grateful. Grateful for Bill's vision, his spirit, his courage, his values and above all his "realness". He was a true "mensch". May he Rest in Peace and my condolences go out to his family.

    annabanana
    When I first found this site a few months ago I read a lot...but missed that Epoman had passed on. I read practically everything he had written and when I found out he had passed on it was such a shock. I cried like a baby. I felt as if I'd lost a family member and I hadn't even joined this forum yet. He has left such an incredible gift! Here's to you, Epoman!

    My heart goes out to “Epokid and Epowife” as I read the tributes to Bill “Epoman” Halcomb. Not only has he left a loving legacy to a family that I am sure misses him with all of their hearts, yet Epoman lives on in my own life as I daily read over all of the new posts added since the last time I was on IHD, which is usually at least two or three times a day. Epoman is a daily part of my life and an inspiration to all those who suffer with renal disease. Epoman not only made a difference, he still is making a difference even after his death. What a legacy of love, caring and sharing from a man I will never meet on this side of eternity, yet I seem to know him any way as a close and dear friend.

    Let this be just one more loving tribute to a man that will continue to make a difference in my life and many others that never had the pleasure to know Epoman in person . The influences in life that one man can have over those that he has never met is a legacy that we all in one way or another leave for those that are left behind. Rita remembers fondly her time training Epoman and Epowife and regrets the life cut short by such a prevalent disease. As I was bombarded with all the different people doing intakes for my home dialysis training, I was asked a simple question of “How tall are you?” My answer was, “Much shorter than before I started my training, because every time I turn around, Rita is tapping her hands and telling me “chop/chop” to get a move on.” I wonder how many times Rita told Bill “Epoman” Halcomb “chop/chop” as I sit atop my “throne” here in this somewhat cramped training room.

    Bill, you have touched my life through IHD in so many countless ways, and now through Rita and the same dialysis chair that you sat in for your NxStage training, I am drawn even closer to you, may your soul rest in peace. Your friend and fellow renal disease sufferer, Peter, aka Hemodoc.

    June 12, 2009

    Dialysis & CKD Blog Report 6/12

    By Miriam Lippel Blum

     Here are the CKD related blogs updated since my update on 6/9.   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 Bill discusses DaVita's concerns about a public insurance plan and makes the case that it would not decimate dialysis provider finances; H1N1 is now a pandemic, suggestions for unit and dialyzor preparation (Don't delay, flu season will be here sooner than you think.); Professor John Agar, MD received the Medal of the Order of Australia (A great honor for a most honorable and compassionate physician.)
    • Kamal Shah's Blog Kamal requires technician help with his nocturnal dialysis but hates being dependent, especially when the tech is late.
    • Kaply, Inc. Tracy thinks hydrocodone should have stool softener added to it. (Oh, I agree with that.); she finds out that MRI dyes can be fatal if you have no kidney function.
    • Toastiest has a photo of his dog.
    • Birdman describes two full days of transplant pre-testing including a cardiac catheterization, looks like he's good to go.
    • The Life of a 20-Something With Lupus has been too busy to blog but links us to a photo of a cool cake she baked that looks like a police shirt; a very detailed post on skincare and what works for her.
    • Becky Perry has some summer plans, struggles with a waning appetite.
    • On the Road to a Cure shares results from an international survey that highlight the significant impact of lupus on patients' lives.
    • Really, I'm as Old as I Feel? has a beautiful birthday letter to 2 yr. old Abby.
    • I Am. Are you? has a link to an in-depth interview with a double lung transplant recipient and his donor; Donate Life Illinois activities.
    •  Life on Dialysis  has cut off love interests due to his illness, because he feels it would not be fair to the person. Now focuses on making a mark in his professional domain.
    • Dialysis Postings explains why he blogs on kidney failure and dialysis.
    • Bud's Ramblings visitors bring gifts and Biofreeze, and they all take a scenic railroad trip.
    • Disability Prejudice And Civil Rights Watch  has a quote to live by; a black space and link to the NY Times article about the US Holocaust Museum shooting.
    • Renal Fellow Network has a brief overview of the structure and function of animal kidneys (other than humans); a strategy to minimize the risk of infertility in women taking Cytoxan; symptoms and treatment for Gestational diabetes insipidus. 
    • Uremic Frost Gene Simmons sold his kidney stone on eBay (Yuk!) for 15K (Okay, it was for charity...but still, yuk.); a study suggesting a genetic ink in CKD in African Americans; Israeli scientists identified key substances in exhaled breath associated with healthy  and diseased kidneys raising expectations for development of diagnostic and screening tests that literally sniff out CKD in its earliest and most treatable stages. (Amazing and wonderful!)
    • Renal tsar's blog has a link to the Renal NSF update for June.
    • Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) the TV goes out in his dialysis unit, hopes it is repaired soon. 
    • Neophron's Senescence has an open letter to his State Representative about health care reform.
    • pkdmom2five  daughter has a MRSA infected abcess requiring surgery, she worries whether insurance will cover post-care; she can't handle the wound care, nurse will come twice a day, photos of the wound.
    • Lemonade and Kidneys celebrates son's 5th grade graduation with pool party.
    • Work In Progress has another bladder cancer surgery, hopes it's the last, and is grateful to her doctors for saving her life.
    • I need a kidney Suzanne's kidney isn't suitable for Jason but qualifies for the exchange program.
    • Unfiltered Hope  a new blog to our list, Sara writes about her husband's CKD, dialysis, and possible second transplant.
    • My Kidney - Stories about Life (and living!) with Bum Kidneys celebrates the second anniversary of her transplant.
    • The Renal Unit has current renal tweets, news, and blogs.

      June 11, 2009

      Professor John Agar receives the Medal of the Order of Australia

       By Bill Peckham

      Medal_of_the_order_of_australia_frontCongratulations to friend of DSEN Professor John Agar MD who has been presented with Australia's Medal of the Order of Australia "for his service to renal medicine and the Geelong community". The article goes on to note the path breaking nature of Dr. Agar's work and the inspiration that he provides.

      Unstated is the inspiration via internet interaction that Dr. Agar provides directly to dialyzors all over the world. Inspiration and motivating facts, to dialyzors and our loved ones to seek out healthier forms of renal replacement. Dr. Agar's website Nocturnal Home Haemodialysis has motivated many people in the US and all over the world to dialyze more - both more frequently and for more time. 

      The two articles (part 1; part 2) by Dr. Agar on Home Dialysis Central concerning fluid balance and dialysis are must reading for those of us with CKD5. Dr. Agar's presentation on needle placement convinced me to change the orientation of my arterial needle.

      Dr. Agar is one of the few luminaries of hemodialysis that is willing to directly and publicly interact with dialyzors (on HDC and in comments to DSEN). He deserves a medal for that alone by my reckoning, but he does so much more. Thank you Australia for recognizing a great doctor; a great man.

      What does an H1N1 pandemic mean for the provision of dialysis?

      By Bill Peckham

      This afternoon the World Health Organization raised the pandemic alert level to 6, the highest alert level. Dr Margaret Chan Director-General of the World Health Organization (WHO) made the announcement:

      On the basis of available evidence, and these expert assessments of the evidence, the scientific criteria for an influenza pandemic have been met.

      I have therefore decided to raise the level of influenza pandemic alert from phase 5 to phase 6.

      The world is now at the start of the 2009 influenza pandemic.

      The 2009 influenza pandemic. I thought we would see a level 6 pandemic announced a month ago, so this announcement shouldn't be a surprise. Chan's announcement does reveal a change in how the WHO perceives H1N1's severity:

      Globally, we have good reason to believe that this pandemic, at least in its early days, will be of moderate severity. As we know from experience, severity can vary, depending on many factors, from one country to another.

      On present evidence, the overwhelming majority of patients experience mild symptoms and make a rapid and full recovery, often in the absence of any form of medical treatment.

      Previously the H1N1 virus was described as having a mild severity (there were many reports equating the severity of illness caused by H1N1 to the severity of illness caused by seasonal flu). This change to moderate was, I think, precipitated by H1N1's apparent severity in Canada's far north among the indigenous population - Canada's First Nations.

      If the H1N1 virus causes moderate disease generally it appears to be causing severe disease in those with underlying health conditions, conditions that include CKD5. Over half of the deaths from H1N1 have been in people with underlying health conditions, while it is thought that about one third of the overall population would be said to have an underlying health condition.

      We don't know the true severity of H1N1; we don't know what the practical difference is between mild and moderate influenza strain by the WHO's reckoning. The one piece of data that Chan provided in her announcement was:

      In some of these countries, around 2% of cases have developed severe illness, often with very rapid progression to life-threatening pneumonia.

      It is hard to have any confidence in Chan's 2% number. In order to calculate the virus's severity, e.g. What percent of those who get sick need hospitalization? And of those, what percent die?, we need to know the number of people infected. Right now we only have guesses since testing for the H1N1 virus has largely stopped. We also would have to calculate severity based on the number of people infected when those hospitalized or dead were first infected. If the disease takes several weeks to manifest its severity then calculating the attack rate or fatality rate by using current prevalence will understate the severity.

      Mild, Moderate or Severe - What Should We Do right Now?

      I think these four months before the start of our seasonal flu season is God given time that the US renal community should use to prepare for a significant influenza event. Preparation should focus on established emergency preparation best practices. For individuals this includes a two weeks stockpile of food and prescription medications, preparation for if someone in the household gets sick: over the counter medications, and basic medical supplies e.g thermometer, blood pressure device, and non-pharmaceutical interventions e.g. masks, hand sanitizer.

      Dialysis units should follow emergency planning best practices:

      • build infrastructure and strengthen relationships with local emergency planning officers
      • planned flexibility; prepare for worst-case scenarios
      • engage patients, staff and MDs in planning
      • communicate plans to stakeholders and public

      Every dialysis unit should have a working relationship with their local emergency planning department - in Seattle this is at the county level, in other jurisdictions it could well be someone else. Dialysis providers must consider bad scenarios. The course of the current H1N1 pandemic is very similar to the course of the 1918 H1N1 pandemic, frighteningly similar. Both started with the flu season extending into summer but with what was seen as a mild severity. There are a number of questions dialysis providers must answer now as part of their preparation.

      Units need to consider what they will do if 50% of their staff does not report to work for a prolonged period; units need to establish policies if a staff person has flu symptoms; if a patient has flu symptoms; what to do if members of patient or staff households exhibit flu symptoms. These policies must be based on the assumption that local hospitals will be overwhelmed. Dialysis unit policies and procedures cannot rely on emergency medicine to treat patients that have the flu or exhibit flu symptoms.

      Emergency planning best practices direct planners to include their stakeholders in the planning process - for dialysis providers this would include patients, doctors, staff and patient families - because building and maintaining trust is a vital component to successful emergency planning. By including all stakeholders in the emergency planning process and then communicating the plan before it is needed, dialysis providers can increase the trust that will be necessary to maintain the provision of dialysis.

      Patients need to know that dialysis will not be withheld if they exhibit flu like symptoms. The provision of dialysis is going to face a severe challenge; we have four months to prepare. Let's use the time wisely.

      June 10, 2009

      Is a robust public insurance plan a threat to the provision of dialysis?

      By Bill Peckham

      DaVita's first quarter of 2009 Earnings Call (from April 28, 2009) transcript is online available from Seeking Alpha. It includes DaVita CEO Kent Thiry's take on healthcare reform and what a "public plan" would mean for DaVita. At the Kidney Care Partners' meeting recently in DC I heard that alarmist terms were bandied about when discussing what the impact might be of a public insurance plan (here is a PDF making the case for a robust public plan). Reading through the DaVita call transcript it is clear that Davita's business model depends on treating people with private insurance and a robust public plan is seen by DaVita as a threat to their business model.

      In prepared remarks to start the call Thiry asks and answers a series of questions on the issue health insurance reform:

      Question number two, what benefit would the dialysis received from any expansion coverage for the uninsured? The answer is simple. It would be a positive if we increase the number of insures with private insurance and neutral if the expansion were entirely Medicare. 

      His answer isn't complete because it leaves Medicaid out of the equation. Right now if someone has CKD5 and no insurance they will, in most states, have to spend down to qualify for Medicaid. After 33 months they'll qualify for Medicare if they have enough quarters of work. Those with Medicare through disability or CKD5 vintage might still need Medicaid to pay the 20% not covered by Medicare - these are the so called dual eligibles: Medicare primary and Medicaid secondary.

      In most states Medicaid is an awful payer. On average 10% of DaVita's patients are Medicaid primary and an additional third likely have Medicaid as their secondary payer to Medicare but at no time during the call is Medicaid mentioned. In some states when Medicaid is secondary to Medicare, Medicaid does not pay the 20% Medicare leaves unpaid. To the degree a public plan would draw in people who are currently covered by Medicaid, dialysis providers (including DaVita) will benefit and it is a significant benefit in states where Medicaid is a bad payer, for instance Florida where DaVita has many units.

      Again and again on this call the importance of the private payers are highlighted (note there is an error in the transcript in several places they have "pair" instead of "payer") and health insurance reform is seen only through the lens of what it would mean to the lucrative business of treating private pay patients. I understand that this is a point of view coming from a for profit dialysis provider with fiduciary responsibilities to stockholders, that's fine. But I think this is the wrong way for the KCP to position themselves on the issue.

      I think a public plan would be very good for the people of working age who require dialysis and I think a public plan would just as likely increase average reimbursement in many states. I think the KCP should support a public insurance option.

      DaVita and the rest of the US dialysis providers are not driving the healthcare reform discussion in DC but as matter of principal KCP should support reform that would allow people treating their CKD with dialysis options, options other than Medicaid. A robust public insurance option would allow people with CKD5 options that are now closed, particularly employment and entrepreneurial options. It would improve the lives of those with CKD5 and there is no reason to think it would decimate dialysis provider finances.

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