Dialysis from the sharp end of the needle

Paddling for Dialysis set to launch

By Bill Peckham

I haven't been posting blog reports, hopefully they'll return soon ... until then be sure to check in on Erich at Paddling on Dialysis for Kidney Health. Tomorrow Erich will embark on a 250 mile canoe adventure, in part to mark his 10th year of using dialysis, and in part to raise money for the NKF of Michigan. On Erich's blog you'll find links to recent news articles and updates from the river.

Dialysis & CKD Blog Report 3/30

By Bill Peckham

Here are the CKD related blogs updated since my last report on 3/20. One new blog added and two blogs fire up after lull.

As always if you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions. Feel free to nominate your own favorite post.

• Dialysis from the sharp end of the needle Peter looks at unit policies and industry standards; David writes on the intersection between docs and dialyzors and Doc tapped to head CMS; I look for signs that the CKD advocacy community is changing advocacy strategies in light of the Affordable Care Act
• Kamal Shah's Blog announces the opening of what looks to be a very progressive and welcoming unit in Hyderabad (this provokes wanderdesire); takes more control of his own treatments (do what you can, while you can); skip Love, sex aur dhokha; work isn't all work
• Kaply, Inc. (I'm way behind on my Kaply, who was) sick; gets jewelry; showers; makes a tomato cry; is off food with a shelf life; moves her furniture around
• Toastiest polls suggest a disconnect; window to incenter nocturnal; cats through time; furniture through time; new couch
• NxStage Users Radi is home; Rich looks at PPS report; Katrena Lynn joins conversation with training diary
• Hasten down the wire Two multi-topic blotters and everyone can make TV
• Paddling on Dialysis for Kidney Health gets a corporate sponsor; a transaction at Sears leaves him reflective then recommitted to the 20K fund raising goal
• My Kidney Chronicles new DSEN CKD blog to date tracking the transition to incenter hemo
• The inner game of PKD set a goal; live in the moment; develop the habit of learning
• Joyful Mother window into living with PD
• CHRONIC POSITIVITY update - lights are all green
• Transplant, Tantrums, & Tiaras is too busy having fun to write it all down
• On the Road to a Lupus Cure advocacy day report; research; advocacy day video; more research
• Really, I'm as Old as I Feel? sparks up the grill; recounts past week's menu; anniversary #8
• I Am. Are you? mascots continue training - there's video, tribute song
• Dialyse This back from Duluth, it's cold up north
• Bud's Ramblings is left at home alone, spring is coming
• Linda Gromko MD kidneycare preparing for the next step after prolonged bed rest/hospitalization
• Precious Bodily Fluids running for 26 miles may not be all upside
• Renal Fellow Network is keeping busy with ten posts: the ACCORD study needs to be flagged - maintaining the peritoneum transport; low BP is more dangerous than high BP; Pancreas transplant info; nephrons are what matter; and more
• Uremic Frost Happy Doctor's Day; WKD; Nobel Prize; NKF²
• UKidney uncredited cross posting from Renal Fellows, aka plagiarism (tisk tisk tisk)
• Pediatric Nephrology nine posts including postive linking to Peter on DSEN; Kamal's PD experience; video, WKD and Grand Rounds
• Nephron Power  11 posts covering everything from horseshoe kidneys to Hollenhurst plaque and clinical cases
• pkdmom2five help; gratitude; courage
• Jean Louis Clemendot (Newest posts  at the bottom of the page) Daily reports as he gets under sail, heavy winds and rough seas on the way to the ABCs and then the Kuna nation and then the Panama Canal
• Kidney Notes twitter like blog activity
• Lemonade and Kidneys sets down to write - goes with latest kidney  news
• The Daily Dialysis gout; need to get to target BMI
• Joe Dialyzer steady posting covers FMC view on bundling and FMC patient stories; a video; NKF
• ....And Bells on Her Toes Easter is better this year; talking is fun; cats are tough; life
• Mushroom's Blog eponymous hat
• My Wife Has Lupus New drug offers some hope
• Biologically Safe Water Filters report from the ADC
• Encompass Network Partners foot screening poll
• Kidney Community Emergency Response FDA safety announcement
• Libre Clothing infusion clothes for sale
• NephrOnline Blogs 
• Renal BizBlog UNOS policy; unit data reporting changes
• Kidney Diet Tips salt is bad for people with CKD
• Renal PatientView Blog travel labs posted publicly? (couldn't do it in the US)
• My Kidney checks in, been busy away from personal blogs

Dialysis & CKD Blog Report 3/20

By Bill Peckham

Here are the CKD related blogs updated since my last report on 3/16. One new blog added - see if you can find it - and PD dialyzor Jean Louis is setting sail with real time English translations so you have no excuse and should follow his trip as he heads from the Caribbean to Tahiti, while using PD.

As always if you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions. Feel free to nominate your own favorite post.

• Dialysis from the sharp end of the needle looks at the national advocacy scene, tries to offer constructive advise; Peter follows the K data back to 1974
• Kamal Shah's Blog cheers on medical oversight
• Kaply, Inc. Tracy's hair is great, Amy is great and there was walking. And birthday lasagna, also.
• Toastiest  checks where the Google places his flickrs; cats; posts the text of the President's speech to the Democratic caucus (I haven't had much luck making sense of the outrage either)
• NxStage Users Radi4music keeps up the training diary with nice things to say about the Northwest Kidney Centers (without NKC there would be no DSEN)
• Hasten down the wire judging criticism requires considering the source
• The inner game of PKD continuing the QoL blogging - passion
• The Life of a 20-Something With Lupus ROs are just another thing that can break
• On the Road to a Lupus Cure support the Lupus Foundation's advocacy efforts from home
• Really, I'm as Old as I Feel? a new rain coat; classroom report - parent teacher conference night
• I Am. Are you? yes there are mascots aplenty and results! 5.1 million registered donors; and you could have won tickets to a concert
• Chronic Chick Talk the dog has a cape
• Bud's Ramblings had a nice day starting with breakfast, gnomes need paint
• Linda Gromko MD kidneycare in the midst of going day to day while her loved one is in the hospital, is able to take a step far enough back to describe the stages of the journey for care partner and care subject
• Precious Bodily Fluids (another thing I will never understand that nephrologists understand)
• Renal Fellow Network is keeping busy with posts from docs covering grand rounds, case reports and identifying the nephrologist as team leader (ideally a patient/nephrologist partnership is at the center of care)
• Uremic Frost thought statins would preform better in people with CKD
• UKidney links to RenalWEB RPA report
• Pediatric Nephrology case reports and slides; links to the excellent nephrology history post on Kt/V
• Nephron Power links to nephrology history Kt/V post; presents case study
• pkdmom2five nephrologist visit is less than ideal
• Jean Louis Clemendot (Newest posts are at the bottom of the page) ready to set sail, now the news is live translated into English and Spanish (DSEN will update the link I haven't seen where the Spanish is)
• Kidney Notes guide to the Google; twitter feed to follow
• Lemonade and Kidneys sometimes you need the godfather of soul to say what you feel
• Joe Dialyzer new DSEN CKD blog with NKF links and video (so are we the dialyzee?)
• ....And Bells on Her Toes should be given a vacation - husband is home
• My Wife Has Lupus connects the random
• Encompass Network Partners prevent amputations
• Chronicals of the PD Warrior new blog - went HHD
• Kidney in the News is back with FDA news

The letter I would write to Congress to solicit their help to get the best PPS

By Bill Peckham

I think it is fair to ask what letter I would support, as is often said, it's easy to be a critic. This is the letter I would like to read from four of the leading CKD advocacy groups. I changed the date and the approach:

March 25, 2010

Dear Members of Congress:

We congratulate Congress on the historic vote and the passage of legislation to reform the health system, HR 3590 the Patient Protection and Affordable Care Act. These reforms will benefit people with chronic kidney disease, particularly by ending the practice of excluding people with preexisting conditions from participation in the health insurance market and action to close the so called "Part D donut hole". Thank you.

The dialysis community has been working to implement previously legislated reforms, we are writing to ask your help with that process.

The Centers for Medicare and Medicaid Services (CMS) is in the midst of finalizing its End Stage Renal Disease (ESRD) Prospective Payment System (PPS) Rule.  The rule implements provisions in the Medicare Improvements for Patients and Providers Act of 2008 (MIPPA) that require the Agency to establish a bundled payment system for dialysis services. CMS published the proposed rule last September 16th; the comment period closed December 17.

One measure in HR 3590 that is specific to the ESRD program, Section 10336, directs that:

The Comptroller General of the United States shall conduct a study on the impact on Medicare beneficiary access to high-quality dialysis services of including specified oral drugs that are furnished to such beneficiaries for the treatment of end stage renal disease in the bundled prospective payment system ...

We believe that this provision brings helpful clarity to the choices CMS must make as it prepares the PPS final rule.

In September CMS proposed to shift all oral drugs without injectable equivalents, including calcimimetics and phosphate binders (oral drugs), into the bundle. This proposed policy was the subject of the most public comments during the PPS's comment period. The vast majority of these comments, including the vast majority of comments from people who use dialysis, spoke against the idea of including oral drugs at this time. We feel this consensus position should be supported and we urge Congress to make clear that the GAO report is meant to be a prospective study, that this study should inform the future process of including oral drugs in the PPS.

We believe that CMS can implement the PPS program MIPPA requires in a way that improves care for individuals who need dialysis services and does not endanger the progress in quality of care made in recent years. However, for that to happen CMS must wait for the GAO to study including oral drugs, and allow the implementation of MIPPA to proceed without their inclusion.

We ask that you contact CMS to underscore the intent of your recent legislation. It should be made clear that the study required by Section 10336 should be completed before CMS acts to include oral drugs under the dialysis PPS. By clarifying the intent of the GAO report, you will be supporting the concerns of Medicare beneficiaries.

We asked the beneficiary community, the people who use dialysis, and their loved ones, to engage with the PPS comment process, and they came through with scores of thoughtful, actionable comments. Reading through these many comments it is clear that aside from the inclusion of oral drugs, beneficiaries are most concerned about CMS's method for including laboratory services (labs) and the inclusion of home dialysis training under the routine PPS payment. The comments not only identified the problems they offered solutions. These comments should be acted upon.

We request that you encourage CMS to take seriously the thoughtful comments of beneficiaries, and the thoughtful and actionable comments of the organizations who represent individuals who need life-saving dialysis care, including the undersigned.  The issues are complex and there is limited time to act, but CMS must get the policies right.  At stake is the health and well being of hundreds of thousands of Medicare beneficiaries.

Warm regards,

Maybe the idea is that members of Congress don't have to meet the various comment period deadlines but it seems to me that the place to advocate now is where legislation has created an opening.

The approach of getting Congress to challenge CMS's results could have unintended consequences. Assuming HR 3590 the Patient Protection and Affordable Care Act passes, advocates would be wise to build on the language to study the inclusion of oral drugs and hope that they made their case sufficiently on other issues while the comment period was open.

CKD Advocacy Groups Write Congress a Curious Letter. Why now? Why this?

By Bill Peckham

I'm happy to post this letter, as asked, from four leading CKD advocacy groups to members of Congress concerning the proposed Prospective Payment System for dialysis (PPS). These groups all represent themselves as speaking for those who use dialysis: Dialysis Patient Citizens, Renal Support Network, National Kidney Foundation, and the American Kidney Fund. However, I have to say that I find the letter's reasoning to be internally inconsistent, and I find their choice of issues do not reflect the priorities expressed in the public comments filled by commenters who self identified as dialyzors. 

DPC, RSN, NKF, AKF Letter

I would say that the top beneficiary issue is access to home dialysis; indeed sometime during the next several months would be a good time to ask Congress to voice support for home hemodialysis (HHD) and to ask CMS to encourage HHD in the final PPS but this issue goes unmentioned in the letter.

All four of the signers expressed support for fair home hemodialysis training reimbursement in their public comments to CMS (view all public comments, or download as an Excel file), yet in the letter to Congress this issue is conspicuously absent. The letter chooses to discuss: oral drugs, lab tests, an adjuster for African Americans, and ... a technical issue around a withhold due to the expected cost of providers who choose to phase into the bundle over three years. Come on.

First of all, how can you write a letter to Congress yesterday, this week, and not mention the health insurance reform bill? This signals obliviousness on the part of these advocates. In the left column of DSEN there is a link to The Hunger Site - you should click it. That's there to acknowledge that the provision of dialysis is not the most important issue facing society. The provision of dialysis is not the most important issue facing Congress. Or CMS.

This blog is focused on the provision of dialysis because it's important to me and people read DSEN because the provision of dialysis is important to them but let's not pretend it's the only thing that matters. The timing of this letter makes no sense to me; the content makes less sense.

The health bill that may well be signed by the President and go into law , in the next two weeks, contains the Senate language calling for the GAO to study the inclusion of oral drugs under the PPS. Why continue to bang on about CMS's lack of diligence in proposing oral drugs' inclusion when there is an obvious way for everyone to save face. Study the issue. Get it right. Support the concept of seamless care. These are not difficult positions to take. Additionally, the letter complains about the dollar amount being added to the proposed payment rate, that the amount is not enough to cover the cost of these oral drugs.

I don't think that is appropriate. No one has the full picture of what prices the providers could negotiate for these drugs. It is tempting to say it's not enough but how can you take a position when you don't have access to cost data? Part of my comment about including the oral drugs is that CMS doesn't have access to the cost data because it isn't being done. No one knows what it would cost to provide universal access to these important and useful drugs, so how can these advocacy groups take a position? Because of what they've heard? They should stay away from the numbers.

In general, I agree that the way CMS proposes to include labs is a problem but the way this letter makes the case raises questions. I don't think the primary issue is the copay - MIPPA clearly imagines labs are going to be included. The copay isn't that much and to the extent it is, the letter writers' complaint is with Congress not CMS. The letter is asking Congress to lobby against their own legislation. Tactically the problem is that that this letter raises the copay issue as an important consideration. This undercuts their next concern.

If lab copays are an important consideration. And if singling out ESRD beneficiaries to be the only beneficiaries responsible for lab copays is a problem. Why wouldn't those problems be problems with including a race adjuster? The race adjuster would mean higher copays too. ESRD beneficiaries would be the only Medicare beneficiaries subject to higher copays due to race.

Including a race adjuster could be said to levy a tax on people who self identify as African American. The additional copay due to the race adjuster could be $3 a treatment or more. Ten times the additional copay due to labs tests. The letter asks that "The final rule should not increase the financial burden of care on dialysis patients" but copays will necessarily increase for some people, while for others copays will be less.

This dynamic is in the nature of expanding the bundle and is due largely to the inclusion of EPO. The letter, after raising the copay issue, ignores the varying copay impact of the race adjuster as well as the numerous adjusters that the PPS did propose, in favor of bringing up an obscure provision having to do with paying for providers who opt to phase into the bundle over three years.

That is an odd choice. That is an odd choice for patient centered organizations. I think there is a far more important issue to ask Congress to support.

I believe that at least 10% of Medicare beneficiaries would be happier and better cared for, if they were dialyzing at home. I think the leadership of the four organizations that signed this letter believe that at least 10% of Medicare beneficiaries who use dialysis would be happier and have better clinical outcomes if they were using HHD. That's 40,000 people. The current home hemodialysis training capacity in the United States is less than 4,000 people per year.

When you consider the training needs to replace those who get a transplant or go back incenter we will never meet the true demand for HHD without a magnitude increase in the number of HHD training slots. For every current training slot we need ten. For that to happen CMS will have to create a fair home hemodialysis training payment under the expanded bundle.

Reading the public comments submitted by people who use dialysis, creating a home hemodialysis training rate is the most important change CMS could make to the PPS, yet it isn't even mentioned in this letter. I find that curious.

Dialysis & CKD Blog Report 3/16

By Bill Peckham

Here are the CKD related blogs updated since my last report on 3/2 TWO WEEKS AGO. This will be the most epic blog update to date ... a lot of posts were made in the last two weeks. As always if you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions. Feel free to nominate your own favorite post of the last two weeks ... I dare you to read them all.

• Dialysis from the sharp end of the needle has had 18 posts since the last blog report (my favorite is the Hats Off to Scribner post). Anna stopped by (Yay!); DSEN welcomed two new writers - Jim and David - and the Annual Dialysis Conference came to Seattle which generated a number of posts; Peter has been tracking down research on stunning and now myocardial ischemia in a call for more research (truly an urgent need)
• Kamal Shah's Blog has six posts since the last update - they are a good representation of his blog's topics: the blood tests arrived; iPhone is never the source of the problem; a vignette of India: a film; personal advocacy efforts expand; news on the provision of dialysis (if you haven't read Kamal's blog, check it out; if you have ... cheers)
• Kaply, Inc. is in with ten posts since we last checked and, ah um ... really just go read her blog, if you don't think it's funny, well fine but it is
• Toastiest comes in with eight posts - I really like the top flickr photos but the post asking for a donor is the important one to read; along with his strategy to get some sleep during his nocturnal incenter runs; for you March Madness sorts ... pool up
• NxStage Users has seven new posts by five people including usual suspect Harvey, Dan and Rich and now two new writers Willowtreewren and Radi4Music. Harvey is on the road; Dan reveals he is Dialysis Dan; Rich went to ADC; WTW shares experience gained; R4M is providing a well written training diary as she transitions directly from PD to HHD
• Hasten down the wire with five posts covering digital privacy, internet search and limits to growth; newish blotter feature with short post under various categories (I like the Blotter, I might steal it)
• Paddling on Dialysis for Kidney Health makes up for number of posts (2) by posting entire PPT presentation from the ADC (I think he was planning to sing at one point during his talk - it would be worth flying him in to speak to your group just for the singing!)
• The inner game of PKD has four posts focusing on PKD
• The Life of a 20-Something With Lupus five posts, gets some recognition for her writing; friends have a video; dealing with the doctor's never ending hoops
• The Adventures of Stacy Without An E two posts - gives out awards (you don't want to win one of these); posts a CKD musical
• Joyful Mother keeps us updated
• CHRONIC POSITIVITY February post Tx labs
• Jack's Kidney Adventure it's soccer season already (sure sign of spring)
• Transplant, Tantrums, & Tiaras gets settled into work, a new title and a friend gets the call
• On the Road to a Lupus Cure has six posts promoting ways to get involved with the lupus community and advocacy
• Really, I'm as Old as I Feel? six posts keeping up with life
• I Am. Are you? four posts: embedded videos, ambulatory plush creatures (shiver)
• Chronic Chick Talk video (drummer for Talking Heads did original version); chronic pain is real
• Lupus and Humor five posts including a vent
• Dialyse This heading south of the boarder - to Duluth
• Bud's Ramblings quick update
• Linda Gromko MD kidneycare five posts: tracking Steve's hospital stay (Sending good thoughts); fitting into the home
• Precious Bodily Fluids seven posts including on hypokalemia; irony; kayexalate; RCT; unmatch
  
• Renal Fellow Network has twelve posts as it continues on with a large group of new contributors
• Uremic Frost ten posts covering the latest nephrology news
• UKidney eight posts including DSEN reposts
• Renal tsar's blog eight posts covering NHS reports and news
• Pediatric Nephrology and the winner is ... Pediatric Nephrology with 31 posts
• Nephron Power 13 posts covering news of the kidney
• Kidney Doc Talk vitamin D for CKD
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) The adventure begins! (Bon Voyage!!)
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) World Kidney Day
• Kidney Notes four posts linking to news for the wired physician
• Lemonade and Kidneys four posts covering life with kids
• OH Positive: Rob needs a Kidney Transplant nice account of kidney walk with writer of other DSEN tracked blog
• The Daily Dialysis working to get listed
• ....And Bells on Her Toes seven post the last three share the heart wrenching experience of having a kid in the hospital (I can not begin to imagine)
• Kidney Dialysis News Baxter recall; new show on the Beeb
• Jenna Franks WKD
• PKD World reposts from the WWW
• Living with PKD YouTube has exercises
• My Wife Has Lupus looks at research; how do you keep track of all this?
• Michael W. Newman example letter when dealing with doctor office billing mistakes
• Life on Dialysis recounts efforts at forging connections; plans go awry; toughs it out
• I'm-u-no-logic a poem
• Berns on Nephrology has new video up
• Encompass Network Partners keeping your feet healthy
• NephrOnline Blogs scattered posts on MedPAC; donors could reap mortality benefits
• Renal BizBlog WKD; C-TEP; ER Tx
• Kidney Diet Tips WKD
• Nathan's PKD guest blogs
• History of Nephrology nice post on the first RCT to look at conventional dialysis

Dialysis & CKD Blog Report 3/2

By Bill Peckham

Here are the CKD related blogs updated since my last report on 2/26. A lot of posting going on over the last few days. If you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle nothing since the last blog report
• Kamal Shah is blogging up a storm with follow ups to getting a properly drawn/stored blood sample to Italy; proves the utility of learning algebra; describes a charitable dialysis funding system; gets a call about a kid with his flavor of CKD
• Kaply, Inc. it's best if the docs just don't look sometimes; the US Postal Service FTW (nice); seriously paperwork, the paperwork is the worst (don't even get me started ... for the vast majority of us it would be fine if the IRS just sent a tax return already filled out and we'd just have to sign it but then people wouldn't hate paying taxes quite as much)
• Toastiest it looks fixed to me; it is hard to live with CKD, doing it alone is tougher still (true); Senator Kyle thinks people prefer to be out of work
• NxStage Users The Harvey Wells posts about his Florida 2010 winter concert tour
• Hasten down the wire adds up the cost of participating in Medicare; is liking himself some Kaply, and other end of the week post stubs
• Paddling on Dialysis for Kidney Health time to support Erich's Grand River Expedition paddlathon
• The inner game of PKD coaching can help you move beyond settling
• Jack's Kidney Adventure CKD is effecting people throughout his circle
• On the Road to a Lupus Cure Lupus Foundation of America marks kidney month with a Lupus Q&A
• I Am. Are you? interview available, organ mascots
• Lupus and Humor has a book review
• Dialyse This isn't orange, TV is coming back
• Bud's Ramblings snowing in March
• Renal Fellow Network looks at a Nature Genetics article
• UKidney FSGS is linked to steroids; exercise is good; drugs can be good or bad
• Renal tsar's blog kicks off a busy March with a flurry of posts
• Pediatric Nephrology is blogging regularly - KI PD case; conference in Spain; masked hypertension; links to surgical retrospective; kids benefit from intensified dialysis; embeds PPT; finds a kindred blogger, deadlines loom
• Nephron Power runs a clinical case; like Nephrology on demand; KI's what's your diagnosis
• pkdmom2five posts update
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) is counting the days to departure, bides time by living the good life in France
• Lemonade and Kidneys February provided a lot of opportunities to make lemonade
• Rob and Danielle's Kidney Blog things moving along, getting ready for a fund run - could be multiple DSEN tracked blog participation
• The Ballad of Billy The Kidney second part of the zip code matters in Oz series
• ....And Bells on Her Toes back at home; donor back to work; food preferences are genetic; eyes are mostly alright
• Life on Dialysis reading about it isn't the same as doing it; relates the Indian version of Goofus and Gallant; introducing new people to the pleasure of the trek; great vignette from trek in India
• Nephrosphere combination therapies are a challenge; arterial stiffness
• DailyHemo - Home Dialysis Advocates many new videos posted
• Kidney Community Emergency Response OneTouch SureStep Test Strip recall
• My Chronic Kidney Disease checks in with one year test results and update
• I'm-u-no-logic checks in with a daily routine recap

Dialysis & CKD Blog Report 2/26

By Bill Peckham

Here are the CKD related blogs updated since my last report on 2/24. If you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle considers ESRD legislation in light of DC activity; revisits my PPS comments in light of recent reporting
• Kaply, Inc. Sudafed and Chinatown The International District go well together; will be prodded and poked, is ok with it
• The inner game of PKD pay attention to the big picture and wake up people, you would benefit from some coaching
• On the Road to a Lupus Cure vote! for a Cure Lupus themed car
• I Am. Are you?  people are walking to the top of Chicago's Hancock tower (I'd love to try this, not sure if I could make it)
• Linda Gromko MD kidneycare patients aren't the only ones who have to learn what is worth worrying about
• Precious Bodily Fluids pre-nephrectomy drug treatment can be helpful; NKF has produced materials for CKD4 education (I'd like to hear user reports/reviews)
• Pediatric Nephrology highlights a pediatric nephrology transplant article; posts one of my favorites of Vidal's poems (should have credited Anna's editing. Vidal's original format is like a scream, Vidal emailed that he liked Anna's editing, I think with Anna's editing the prose were revealed as poetry and the scream turned reflective. A bitter sweet reminiscence. I like it more each time I read it)
• Nephron Power wonders about the usefulness of diabetic CKD classification system in the absence of routine biopsies
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) is celebrating World Kidney Day with speaking appearances, all leading up to a March 12th departure for Martinique and then onto the Pacific! (outstanding!)
  
• The Ballad of Billy The Kidney looks at the Australian equivalent of your zip code determining your access to dialysis - particularly in Australia's vast and sparsely populated center.
• Kidney Dialysis News links to PD belt news release
• My Wife Has Lupus identifies connection between symptoms and lupus
• Life on Dialysis posts pictures of what looks to be a great trip to
• The Adventures of Stacy Without An E Is back, reflects on the road already traveled (it really isn't something you would choose to do)

Dialysis & CKD Blog Report 2/24

By Bill Peckham

Here are the CKD related blogs updated since Miriam's last report on 2/22. (Miriam decided to take a break from Blog Report duty; I am very appreciative of her work to keep it current over the last year). If you have or know of a blog that should be on the list let me know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle I'm busy
• Kamal Shah is making it a lot easier for the next dialyzor in India who needs to send blood samples to Italy
• Kaply, Inc. has an event, it sucks and now it is prudent to be dialyzing in the company of others (that's pretty scary, the uncertainty would the hardest for me to deal with)
• Toastiest dog pic; likes Congressman Weiner's remarks (I can think of more than a few Dems who seem to shill for insurers)
• NxStage Users Dan Larrabee kicks off a new group blog by NxStagers
• Hasten down the wire computing usability isn't advancing as fast as would be good; is blown away on meeting Bee Bleedorn.
• Paddling on Dialysis for Kidney Health the Grand River
• Joyful Mother runs down the flavors of CKD; a WAH reunion is imminent; a poem
• On the Road to a Lupus Cure new video; new magazine, if you have Lupus the Lupus Foundation of America would like to talk to you
• Really, I'm as Old as I Feel? kid in a box
• Chronic Chick Talk look for the light; still thinks little brother could have benefited from a stronger lesson
• Bud's Ramblings vascular issues
• Renal Fellow Network will try to continue without Nathan
• Uremic Frost the Crit-Line; working out the best combination of medications to treat high blood pressure
• Pediatric Nephrology is busy!
• Neophron's Senescence celebrates 25 years of marriage
• Nephron Power kidney biopsies should not be taken lightly; body position matters when doing a urinalysis (how exactly do you routinely sample while supine?)
• Kidney Doc Talk what exactly is acute renal failure?
• Mid-life ramblings marks 59 years
• ....And Bells on Her Toes snow, ice dancing and impaired driving (should have called someone to drive instead); rides the rails
• Kidney Dialysis News FMC to recognize 31 patients, one each day of March - National Kidney Month
• Biologically Safe Water Filters water systems are important
• Renal BizBlog FMC doubles funds available to buy dialysis units because the bundle is going to accelerate dialysis provider consolidation
• Kidney Diet Tips some sort of phosphorus game is being launched (cringe)
• 3 1/2 Hours of Free Cable flags paired donation info
• PKD Blog fires back up with post on autosomal dominant polycystic kidney disease

Dialysis & CKD Blog Report 2/22

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/19. 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 finds that "imli goli," a concoction of tamarind pulp and sugar helps him control his fluid intake, Altoids were helpful, too, but not natural. (Ask your local Indian grocery to see if they carry them.)
• Toastiest posts a Beatles music video; reports via a NY Times article by Thomas Friedman that in Tracy, CA residents will now have to pay every time they call 9-1-1 for a medical emergency (This is so sad and scary); links to a story about a Holocaust survivor who recently passed away leaving 2000 descendants.
• The Life of a 20-Something With Lupus  Flo is being weaned off prednisone and finally got an appointment with an ENT; her ears are beginning to pop, she's not sure if that's good or bad but hopes it means the antibiotics are working.
• Joyful Mother Becky is feeling disappointed with God; struggles with a crisis of faith; shares a download-able lesson plan template.
• Transplant, Tantrums, & Tiaras Holly describes her new job, being a key person for six children, she's excited about planning activities.
• On the Road to a Lupus Cure A Swedish study suggests that some measurable features of lupus may contribute to the risk for heart disease, particularly those associated with kidney disease, blood vessel inflammation, or how blood clotting is regulated.
• Really, I'm as Old as I Feel? Rob says that Abby is making progress in the potty training department, some humorous stories including wee-wee on the Wii.
• I Am. Are you? Donate Life Illinois is counting down to their Mascots On A Mission event - March 1, 2010.
• The Ins and Outs of Dialysis Excessive bleeding at the needle sites sent John and Gayle to the surgery center for a little fistula tuneup, they brought baked goodies for the staff and had fun despite the medical stuff. (John and Gayle have the most upbeat attitudes I have ever encountered! They are great role models.)
• Linda Gromko MD kidneycare Linda describes Metabolic Syndrome" and what you can do to combat it.
• UKidney Statin therapy may induce primary hypogonadism and should be considered a possible confounding factor when evaluating testosterone levels in patients with erectile dysfunction (ED), according to Italian researchers; a study shows that tenecteplase, a thrombolytic agent, is a safe and effective treatment for dysfunctional tunneled hemodialysis (HD) catheters,
• Pediatric Nephrology A study shows that lowering blood pressure can slow pediatric chronic kidney disease progression; links to an editorial discussing the global threat of diabetes and diabetic kidney disease; recommends an article on the diagnostic  evaluation of urolithiasis.
• Nephron Power Hong Kong has a PD First initiative with built in financial incentives, that's why 81% of their CKD5 population are on PD.
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) Jean-Louis describes a radio interview he gave, is still trying to solve how he can more accurately weigh himself while on the boat.
• The Daily Dialysis Bonni is blogging on her Blackberry while waiting for Mark to get his graft cleared of a blockage, she is glad for technology that helps keep her occupied during these long waiting room periods; Mark's graft is fine, stormy winter weather causes problems for their dialysis clinic.
• ....And Bells on Her Toes Kelly is concerned when the insurance company wouldn't allow a refill of Alex's Cellcept in a timely manner; Kelly's daughter Lexy knows just what to say to melt her Mommy's heart.
• Michael W. Newman If you call Michael's help-line he will give you letters from his book that will help keep creditors at arm's length for at least 90 days. There is no charge for the letters.
• Life on Dialysis Samiir describes how a children's game can turn hurtful when played by adults.
• NephrOnline Blogs Rebecca Zumoff comments on a new study that suggests regulatory pressures are unnecessarily stalling seniors' access to donated kidneys.
• 3 1/2 Hours of Free Cable Jason needs some good topics to write about and solicits suggestions from readers in the blogosphere, send him a question and he'll answer it in his blog; links to an announcement by UNOS that a new federally funded pilot program has been created to find out if kidney paired donation, which pairs eligible live donors with patients who have a donor that is not medically compatible, can make more transplants possible.
•  My Damn Kidneys Al comes back to his old blog to say that he's doing great with his new kidney and he's leaving his old blog as is and available to read if you're interested as it was part of his journey.

Dialysis & CKD Blog Report 2/19

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/16. 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 finds that his dialysis related headaches go away now that he is dialyzing 5 days a week with the NxStage System One; the blog report.
• Kamal Shah's Blog Kamal notes that his blog is getting more junk comments, and wonders why; some of Kamal's co-workers start rumors about possible city violence in the hopes of getting a day off.
• Kaply, Inc. Tracy took her old cat to the vet, cat is okay just old, Tracy will be visiting family in New Mexico and looks forward to her Mom's cooking, got a gift of some Olympics red mittens and is very pleased with them.
• Toastiest Toastie reflects on his three years of blogging, compares some of his old attitudes with his current ones; loves Roger Ebert and recommends his blog, reviews, and an Esquire interview with him; a video of how to put the spark back into the relationship with your cat.
• Hasten down the wire reports on the "recellurization" process which is the next best scientific hope for growing one's own kidneys.  He has a video interview with Doris Taylor whose lab created a beating animal heart and is now moving ahead with new technology to create other organs.
• The Life of a 20-Something With Lupus Flo's ear infection is affecting her hearing which is scaring her and her hematologist sends her to an ENT specialist after looking in her ears,  she has to do a presentation at school and will do it despite feeling so lousy but may have to drop a class because she has missed so many sessions.
• Becky Perry reviews The Pastor's Wife by Jennifer AlLee; Becky has started a new blog for her kidney related posts; at a prayer service, one of her boys gets up to pray for Haiti and her other son prays for his Mom whose small veins cause her grief at the doctor's office; shares a photo of her home-made bread and discusses bread making; lists three things that make her happy.
• On the Road to a Lupus Cure For those going to LFA's 2010 Advocacy Day on Capitol Hill on March 15-16, 2010, a discounted room rate is only guaranteed through Friday, February 19 so register early; it's Walk for Lupus Now season at the Lupus Foundation of America. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services, has a link to find an event near you.
• Really, I'm as Old as I Feel? has a cute photo of Abby choosing a reward for her Potty Training success (Yay, Abby!); gives a very positive review of Raising an Emotionally Healthy Child When a Parent is Sick by Paula Rauch and Anna Muriel.
• I Am. Are you? Melissa Simon, heart transplant recipient, shares her thoughts, excitement and anticipation  at meeting her donor family for the first time; a Donate Life commercial from Minnesota.
• Chronic Chick Talk Snow days increase her pain from lupus flares; describes her mother's breast cancer experience and reminds women of the importance of yearly mammograms.
• Linda Gromko MD kidneycare Linda marks the anniversary of Steve's failed transplant with sadness about what happened but cautious optimism for what may be in the future.
• Uremic Frost shares the post from Renal Fellows Network about the death of Dr. Nathan Hellman; a study of Chinese PD patients concluded that low dietary salt intake in this population was an independent risk factor for high overall and cardiovascular mortality.
• UKidney A Canadian study found that those with heavy proteinuria but without overtly abnormal eGFR had worse clinical outcomes than subjects with moderately reduced eGFR but without proteinuria; scientists have discovered a molecular pathway that works through the immune system to regenerate damaged kidney tissues and may lead to new therapies for repairing injury in a number of organs; reports on and questions the results of the ACCOMPLISH study which suggested that the combination of benazapril plus amlodipine is superior to benazapril plus hydrochlorothiazide for the prevention of a composite cardiovascular outcome.
• Renal tsar's blog  The NICE Guideline on venous thromboembolism (pulmonary embolism and deep vein thrombosis) is highly relevant to all those who work in kidney services as this condition is two times more likely in people with CKD than without.
• Pediatric Nephrology links to Toastie's photo post about how he feels on nocturnal dialysis; links to and welcomes the new blog Kidney Doc Talk; links to a report on good practices for radiologists on Acute Kidney Injury, and also an article by the Renal tsar on the same subject; an article in the NEJM has a case report on a baby with obstructive uropathy caused by Melamine ingestion nephrotoxicity; has Volume V of the Pediatric Renal Grand Rounds; links to a CME presentation on urinalysis.
• Nephron Power A study seems to indicate that blood and marrow transplant nephropathy may really be radiation caused; a clinical case question, answer and review on the cause of an elevated serum ion gap.
• pkdmom2five has a photo of what her husband wrote on the menu board for today's dinner.
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) Jean-Louis has some articles written about him and will be interviewed on a radio show, he solves a battery problem with his boat, will spend a few days in Martinique with a friend before going back to sea, his friend will accompany him across the Caribbean Sea, Panama and even pass Galapagos and then Jean-Louis will perform solo the Pacific crossing.
• Dialysis and Me Barry starts to prepare an emergency bag to take to the hospital for when he next gets a call for a transplant.
• Kidney Notes - Exploring the Intersection of Medicine and Technology posts his Twitter name so you can get interesting medical links (not just kidney-related) posted automatically.
• Lemonade and Kidneys Ruth has problems with squishy car tires.
• The Ballad of Billy The Kidney relates the inspiring story and attitudes of an extraordinary young man, named Samuel Symons, who suffered cancer as an infant and was not expected to live,  then later expected to live with reduced intellectual capacity as a result of cancer treatments - but now is about to start undergraduate life at university.
• ....And Bells on Her Toes A hawk almost crashes into Kelly's car; Kelly is going to Ottawa for a week for a business conference.
• My Wife Has Lupus Jeff tries to figure out how to respond supportively to his wife's repetitive questions.
• Kidney Community Emergency Response FDA and Amgen notified healthcare professionals and patients that all ESAs must be used under a risk management program; the Kidney Community Emergency Response Coalition (KCER) invites you to nominate an individual or organization that has provided outstanding leadership and service to the renal community in disaster preparedness and response. 
• Renal BizBlog As the dialysis bundle inches closer to reality, so does the potential approval of Affymax’s new anemia drug Hematide, which could benefit from the new payment structure.
• The Daily Dialysis Bonni finally returns to her blog after a long absence to report that Mark's gall bladder surgery went well and seems to have helped his gastrointestinal problems, he has registered with a transplant program but needs to lose 20 pounds to get on their active list, he now is on a phosphate binder and though Bonni knows he is eating contraband foods she hesitates to nag him as he has lost some weight and, in general, seems to be doing better with food choices.

Dialysis & CKD Blog Report 2/16

By Miriam Lippel Blum

Each day when I click on a blog link I never know what I will see and what I will need to share with you.  Today I must share some sad news.  Yesterday, when I opened Renal Fellows Network blog I learned of the untimely death of its writer and founder, Nathan Hellman, MD, PhD. Dr. Hellman was only 36 years old, married with two children, and a brilliant nephrology fellow at Massachusetts General Hospital.  Through his blog he educated many fellow physicians and dialyzors worldwide regarding important concepts and issues in nephrology.  He was a great teacher.  I learned something new every time I visited his blog.  The death of this fine young physician is a loss to the entire renal community and our hearts go out to his family, colleagues, and friends.

Here are the CKD related blogs updated since my last report on 2/13. 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 updates us on statistics and realities of the H1N1 virus and how the CDC let down the children of the USA;  the blog report.
• Kamal Shah's Blog Kamal needs to get some special bloodwork done in Italy that will help him decide whether to attempt a transplant or not.  He finds out that transporting blood samples from India to Italy is a big deal and expensive.
• Kaply, Inc. Tracy loves French, would like to live in Canada except it's too cold, and is unimpressed with the NBC coverage of the Olympics; she describes how she would celebrate Chinese New Year if we came to visit her in Seattle. (We're all coming, Tracy, but I'm definitely not going to eat chicken feet!)
• Toastiest posts a photo of the ceiling of his nocturnal dialysis clinic and writes that he hates this place.
• Hasten down the wire Michael chastens another journalist for evangelizing instead of accurately reporting facts.
• Paddling on Dialysis for Kidney Health Erich "confesses" his good intentions to exercise on Valentine's Day were thwarted, he has to visit the "butt surgeon" and definitely is not happy about it, he is looking for volunteers to paddle a little on the river with him during his boating excursion.
• The inner game of PKD Richie explores questions to ask oneself to help gain focus on what one wishes to get out of life.
• The Life of a 20-Something With Lupus Flo is feeling weak and has pain in her upper arms, she's very frustrated with it and not being able to be at school.
• Becky Perry reviews Walking on Broken Glass by Christa Allan.
• Transplant, Tantrums, & Tiaras Holly does more campaigning for organ donation at a roadshow in Liverpool; describes a night away with friends in Huddersfield.
• On the Road to a Lupus Cure A study of identical twins suggests environmental factors might influence the development of lupus.
• Really, I'm as Old as I Feel? Rob shares the story of his and Anny's struggles with infertility that eventually led to their beloved daughter, Abby.
• I Am. Are you? has photos from a donor family video shoot.
• Chronic Chick Talk has been having technical problems with her blog, hopes it will be fixed soon; is thinking about buying a Dell computer printer because the ink cartridges are inexpensive and her daughter who is being homeschooled uses up a lot of ink..
• Lupus and Humor Since naltrexone is not working for her, Carla returns to using acupuncture and chi-gung for her lupus.
• Dialyse This Cassie is in the hospital, dialysis-caused hemolysis suspected; Cassie is out of the hospital now and looking forward to real food.
• Bud's Ramblings Bud wonders if anyone eats starfruit and shares some information about it (IMPORTANT WARNING: Anyone with significant CKD and certainly CKD5 should NEVER eat starfuit.  It has natural chemicals that do not dialyze out. Consumption by those with kidney failure can produce hiccups, vomiting, nausea, and mental confusion. Fatal outcomes have been documented in some patients. Here is o link to one article about starfruit dangers.)
• Linda Gromko MD kidneycare Linda commends a NxStage technical service representative who helped with a problem, points out the qualities that made his communication so helpful and supportive.
• Renal Fellow Network has an obituary for Nathan Hellman, MD, creator of this blog. A memorial service will be held on Wed. Feb 17 at 2:00 PM at Massachusetts General Hospital.  There is contact information should you wish to contribute to a memorial fund.
• Uremic Frost has a MedPage audio commentary on the NEJM study on AV graft stenting.
• Renal tsar's blog The UK's National Imaging Board issued good practice recommendations for acute kidney injury.
• Pediatric Nephrology writes about the loss of Dr. Nathan Hellman.
• Kidney Doc Talk is another new blog to our list. It is written by Shalini Mundra, MD, who is a nephrologist blogging for non-nephrologists.  In the latest post,  the question of "Why do some dialysis patients with failed renal transplants remain on immunosuppressants?" is explored.
• Medicine is a Why? How? When? What?  This new blog highlights questions and answers as they occur to a renal fellow, Deepak, during his nephrology practice. The last two posts concern PD peritonitis, and concepts he gleaned from reading a dialysis technical manual.
• Jean Louis Clemendot (Newest posts are in French at the bottom of the page, copy and paste into Google Translate) This is also a new blog to the list and follows the nautical adventures of PD dialyzor, Jean-Louis Clemendot, who recently completed a solo trip across the Atlantic.  In his latest post, he writes about some of the media and dialysis conference events he has participated in recently.  He is also planning to sail in the Pacific soon.  He gets a check-up at the hospital and gets the medical green light for further adventures.  He points out that it is the doctor's responsibility to inform patients about the risks of their condition but that's all. The patient, once informed, will choose to live the life he wants, but in return, is solely responsible for what may happen to him because of that choice. (I fully agree with that.) That said, Jean-Louis turns to what is really important to him..a discussion of the possible impact that the El Nino weather phenomenon may have on his sailing plans for the Pacific.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to the Renal Fellows Network obituary for Nathan Hellman.
• Lemonade and Kidneys Ruth dreams that her next career move is going to be to co-produce, with George Clooney, a film adaptation of F. Scott Fitzgerald's novella "May Day" and that she and  Jude Law have begun scouting locations. (Nice dream!)
• Rob and Danielle's Kidney Blog Danielle and Rob decided to sign up to run in the upcoming UNC Kidney Center Kidney Kare 5K run, Danielle reflects on why she wants to get in shape.
• ....And Bells on Her Toes Alex hears a strange transplant story from a repairman; Kelly sees a hawk in a tree near her home and takes a photo of it.
• Jenna Franks Jenna just celebrated her 3rd kidneyversary, but unfortunately is having a rejection episode.  The doctors don't expect the kidney to recover and she will likely eventually return to dialysis or have another transplant. (Our hearts go out to you as you deal with this disappointment.)
• Living with PKD Heather is late for yoga, goes into the gym to use a treadmill, finds out that midriff tops are not allowed.
• Michael W. Newman Michael has redesigned his website.He has now added a help line for people who are in financial difficulty. He offers to help any dialysis patients, and will give advice free of charge. On his blog he is starting a section to discuss heart disease and how to help yourself during an emergency.
• Life on Dialysis Samiir describes an extended trek to the most beautiful place he had ever been to - Sudhagad; he continues writing about his adventure, finds questionable water but they cooked with it, slept well and saw a gorgeous sunrise (there are photos); on the descent they find some potable water, get lost, but eventually find their way down and home; a post about cameras and which ones he likes.
• Encompass Network Partners Interventional cardiologists at Hunterdon Medical Center are now treating patients using a newly FDA-cleared device, the Jetstream Atherectomy System, that clears away and removes potentially deadly artery clogging plaque in leg arteries for those suffering from peripheral arterial disease.
• Nephrosphere While sirolimus has been thought to be a safer immunosuppressant than cyclosporine or tacrolimus from the point of view of nephrotoxicity. This AJKD study suggests otherwise, with an increased risk of low-grade proteinuria and tubular damage.

Dialysis & CKD Blog Report 2/13

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/10. 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 writes about Jean-Louis Clemendot, an amazing PD dialyzor, who successfully made a solo crossing of the Atlantic, while administering his own peritoneal dialysis treatments, Clemendot hopes to continue his adventures by sailing the Panama Canal and the Pacific (We hope to keep you updated regarding his remarkable journeys as they occur); Peter shares his experience trying to get optimal dialysis from his NxStage machine, frustrated with the lack of research and data available to address issues of how to gain the machine's maximum efficiency;   the blog report.
• Kamal Shah's Blog Kamal finds out that the atypical Hemolytic Uremic Syndrome that resulted in his renal failure may have been triggered by vaccinations; he gets some new responsibilities at work and is enjoying exercising his creative freedom in fulfilling  his tasks.
• Kaply, Inc. Tracy's cable box breaks again and she gets a refund, she loves the olympics and cave- aged gouda cheese; has a bad day physically and is cranky so she posts a card with an incendiary message.
• Toastiest Toastie vents about the noise level at nocturnal dialysis; photos of his pets.
• The inner game of PKD Richie discusses how a "life coach" can assist one in “navigating” the twists and turns of the PKD Odyssey.
• The Life of a 20-Something With Lupus  is dizzy and tired from an ear infection, cough/cold, and antibiotics.
• Jack's Kidney Adventure Jack reports that drivers with 4-wheel drive vehicles are needed to get people to dialysis through the blizzard in the Washington DC metro area.  He gives links to contact if you can help.
• Transplant, Tantrums, & Tiaras Holly does some radio interviews to campaign for organ donation, she starts her new job next week, will be working two 10-hour days a week.
• On the Road to a Lupus Cure February is Heart Health Month, Heart disease is a major complication of lupus and is now a leading cause of death among people with lupus, links to an article about how lupus can affect your heart and lungs; the Lupus Foundation of America has Valentine's Day eCards to help you spread messages of affection and friendship while helping to increase awareness of lupus.
• Really, I'm as Old as I Feel? Rob, in Maryland, got 27 inches of snow, which gave an opportunity to stay in and work on Abby's toilet training since diapers were in short supply, he posts a picture of Abby in the snow; Rob admits that  he doesn't like reading books but he just read a self-help book and intends to review it next week.
• I Am. Are you?  has a video about, gold-medal winning Olympic snowboarder Chris Klug who received a lifesaving liver transplant back in 2000.
• Dialyse This Cassie gets sick three hours after taking care of a sick toddler, says this is proof of immune system failure thanks to dialysis.
• Linda Gromko MD kidneycare Linda and a patient who successfully lost weight discuss important attitudinal aspects of how to succeed in a weight loss program.
• Precious Bodily Fluids consulted on a patient with autoimmune hepatitis and acute kidney injury who had the lowest FE-Na (Fractional Excretion of Sodium) he had ever seen; figures out how much sugar is dissolved in total blood volume. (Not a lot when compared with a can of Coke.)
• Uremic Frost Dr. Simon Prince reports that the National Kidney Foundation plans to update its KDOQI Clinical Practice Guideline for Diabetes and Chronic Kidney Disease, which were first published in 2007; despite the company's assurances, Simon's concerns over adverse reactions to Feraheme lead him to switch to another IV iron drug for use in his office; a study shows that a low carb diet can reduce weight and lower blood pressure; a study demonstrated that in the setting of clotting at the venous anastamosis of an AV Graft, the addition of a stent led to improved long term patency as well as freedom from repeat interventions when compared with angioplasty alone.
• UKidney has an article on aquaporins and the kidney.
• Pediatric Nephrology also writes about the study on stent grafts vs. balloon angioplasty for failing dialysis-access grafts; some important points in an NEJM editorial on Fistula First, Stent Graft Second; links to the Fistula First website where you can access audio clips of blood flow through arteriovenous fistulas (AVF) to help dialysis patients and staff learn what to listen for when monitoring the health of vascular accesses; links to a video and an article on how Smartphones can benefit smart pediatricians.
• Nephron Power  has a post on a Time magazine article on epigenetics "Why DNA Isn't Your Destiny;" a post re-evaluating the role of immunosupression in proteinuria.
• ....And Bells on Her Toes Kelly relates a story about how Alex lost his wedding ring on their honeymoon; Alex's creatinine is now down to 151 and they hope to take out surgery staples at the next clinic visit; Caitlyn is sick again and has a fever of 102; Kelly gives her review of the Olympics opening night ceremonies.
• My Wife Has Lupus Jeff hopes to post more often about his family's struggles with his wife's lupus.  (Jeff, there are lots of caregivers out there who will appreciate your posts.  Keep at it.  Even if it's not every Thursday.)
• DailyHemo - Home Dialysis Advocates New Videos: Laura's Home Dialysis Setup (PD); Alonzo Mourning Tours Davita Clinic and Greets Patients; Dialysis Patient Success Stories: Volunteering While On Dialysis; Documentary: His Escort to End (Stopping Dialysis).
• Encompass Network Partners  The NKF is updating its KDOQI Clinical Practice Guideline for Diabetes and Chronic Kidney Disease.
• Kidney Community Emergency Response has an article on how the international renal community responded to the earthquake in Haiti.
• NephrOnline Blogs In Health Beat, Rebecca Zumoff writes about how the renal community, health care workers and patients, needs to be better prepared for the difficult travel conditions that result from winter storms.
• Life on Dialysis Samiir describes a climbing expedition to a fort on top of a huge rock, he can't climb for fear of endangering  his fistula and he forgot his hat so his BP went low from the heat, he had a good time anyway enjoying an amazing view.

 

Dialysis & CKD Blog Report 2/10

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/7. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Bill thinks that TV's best portrayal of a dialyzor was seen this week on the new CBS show Undercover Boss; UK Prime Minister Gordon Brown endorses wider use of home hemodialysis and NxStage is ready to answer the need; Bill will be live blogging the 2010 Annual Dialysis Conference in Seattle, Mar. 6 - 9, he is most looking forward to attending the session entitled: Challenges to and Defenses of Kjellstrand’s Keynote Address at the 2009 ADC: Clinical Observations vs. Randomized Controlled Trials (RCTs) in Dialysis Research; Bill questions whether gender should be a criterion for a case-mix adjuster in the PPS bundle.
• Kamal Shah's Blog Kamal points out that since doctors don't have enough time to analyze complex medical problems, one must be proactive in regard to one's health and educate oneself as much as possible; he is looking for a better RSS feed program with which to follow his blogs. 
• Toastiest Toastie posts his favorite Super Bowl ad -- the one with Betty White; he installed a SuperClock on his website.
• Hasten down the wire Michael explains the Buddhist concept of "Maitreya" and thinks that Raj Patel, author of The Value of Nothing, might be it.
• Paddling on Dialysis for Kidney Health Erich has a joyful moment running with his five-year old daughter and his dog.
• The inner game of PKD Richie writes about how having PKD can be a source of appreciation, even joy.
• Transplant, Tantrums, & Tiaras Holly wants ideas how to improve Donor Day.
• On the Road to a Lupus Cure Steps to take when a family member is diagnosed with lupus; an article on lupus and "The Dating Game."
• I Am. Are you? Donate Life Illinois has a special online Valentine's Day event for Illinois residents.
• The Ins and Outs of Dialysis John and Gayle enjoyed having their three-year old granddaughter at their home for a sleep over.
• Bud's Ramblings Bud listens to the wind chimes on his porch and shares a sweet poem about wind chimes.
• Linda Gromko MD kidneycare Linda and co-author Jane McClure will be presenting a session entitled  "Arranging Your Life When Dialysis Comes Home" on Sunday, March 7 at the International Dialysis Conference March in Seattle.
• Precious Bodily Fluids posts an article he wrote about fructose.
• Renal Fellow Network reports that Jennifer Harman, world famous female professional poker player and transplant recipient, will be donating 1% of all profits to the NephCure Foundation that funds research for life-threatening kidney diseases; some information about endothelial dysfunction and its relation to nephrology, includes an  electron micrograph image showing that the vascular endothelium is actually "hairy."  (I never knew that, did you?); a post on Tamm-Horsfall Protein and kidney disease.
• Uremic Frost Simon links to the six editorials in AJKD regarding the 2009 proposed PPS; North Korean leader Kim Jong-il is receiving regular dialysis treatments and his CKD may be a consequence of diabetes; the Fistula First Web site has added audio clips of blood flow through arteriovenous fistulas (AVF) to help dialysis patients and staff learn what to listen for when monitoring the health of vascular accesses (I listened to them and they're a great resource for new and veteran dialyzors alike.); a presentation by Dr Joel Topf on "Uric Acid, Fructose and Hypertension";  missed CBS's Undercover Boss but shares info about the dialyzor who appeared on the show; new research shows low potassium levels produce an increased risk of death or hospitalization in patients with heart failure and chronic kidney disease.
  
• Pediatric Nephrology also has the story about UK Prime Minister Gordon Brown promising more home hemodialysis, as well as more chemotherapy and better nursing facilities for CKD5 patients and the elderly; wants to know what people are doing for World Kidney Day, Mar. 11; results of his poll question: Do you have dedicated pediatric hemodialysis services, not shared with adult colleagues? 52.4% respondents said not at all; a brief video of how to use the Baxter HomeChoice PD machine; some notes from an article on nephrocalcinosis in preterm infants; and some take home points from a review article on Familial Nephrotic Syndrome.
• Dialysis and Me Barry gets a call for a transplant but it ends up going to another person, he feels ambivalent and emotionally unprepared.
• ....And Bells on Her Toes Kelly posts photos of her little girls; after reading an article about an insurance company refusing to cover a person with a transplant for foreign travel, Kelly is disgusted with insurance companies.
•  Unfiltered Hope Sara asks for prayers for the husband of a friend who is donating a kidney to a stranger, and starting a kidney donation chain. Here's a link to his blog if you want to read what he says about it: Zach's blog. (An amazing friend to have and person to know.); Sara reports that Zach's surgery went well and now there is another person with a working kidney and the donation chain will hopefully help many more. Click here for information on Alliance for Paired Donation.
• Kidney Community Emergency Response KCER volunteers and strategic planners include dozens of kidney-related companies, associations, and organizations who were able to contribute money, supplies, and volunteers to assist in the Haiti relief.
• Renal BizBlog Links to Dr. Linda Gromko's blog's series on Home Dialysis Caregiver Burnout.

Dialysis & CKD Blog Report 2/7

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/4. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle has the blog report.
• Kamal Shah's Blog After Kamal gets his calcium level corrected, his PTH drops to the normal level, too.
• Kaply, Inc. Tracy has already spent all her money this month but still she is grateful for what she has; she is good at saving money when she shops for groceries, made lasagna and loves cheese; is having trouble sleeping and that makes her cranky. 
• Toastiest Toastie notes the death of veteran soap opera actress Frances Reid; changes the background color on his blog to black.
• Birdman Sparrow has a new insulin pump that isn't calibrated correctly, his blood sugar dropped drastically while he was driving, he became unconscious and had an accident, the car was totaled but he escaped injury. (We're glad that you weren't hurt.)
• Hasten down the wire reports on the SEC finally investigating the role of Goldman-Sachs in the US mortgage market collapse.
• The inner game of PKD Richie explores the reason for bothering to play mind games regarding PKD: to change your attitudes to the events and conditions of your life so as to improve them.
• The Life of a 20-Something With Lupus Flo's hemoglobin dropped  further requiring a blood transfusion, she had severe ear and face pain unrelieved by medication, a new doctor is unhelpful and dismissive.
• Becky Perry posts photos of a baby blanket she made for a baby shower; her Friday Felicities post.
• Transplant, Tantrums, & Tiaras Holly shares links to a video about Jess's funeral and some photos of the flowers.
• On the Road to a Lupus Cure The Lupus Foundation of America has created three videos in which doctors talk about their lupus research, and the importance of learning more about lupus-related cardiovascular disease, links to the videos.
• Really, I'm as Old as I Feel? Abby has a bad night and freaks out her Dad.
• Linda Gromko MD kidneycare Part Three of Linda's Caregiver Burnout Series is on treating depression; Part Four: Supporting the Caregiver.
• Precious Bodily Fluids Joel Topf, MD, shares his checklist for routine admission of dialysis patients.
• Renal Fellow Network The use of warfarin in CKD5 patients promotes vascular calcification; a retrospective analysis demonstrates that those patients who had undergone an allograft nephrectomy had a 32% lower adjusted relative risk for all-cause death.
• Uremic Frost posts an audio report on the dangers of herbal medications.
• UKidney has a post on GI bleeding in CKD5 patients; doctors in the UK used a technique called "cryofiltration" to remove the immune molecules that cause rejection, it was the first time it has been used to help a patient receive a non-matched organ; the commonly-used painkiller Paracetamol can protect against kidney failure after severe muscle injury.
• Pediatric Nephrology Important issues in managing adolescents with renal disease; an article on the identification of fibroblastic growth factor 23 (FGF 23) and its role as a key regulator of phosphate and 1.25 dihydroxyvitamin D metabolism; a case report on a PD patient with peritonitis who had green effluent, caused by a biliary leak from a necrotic gall bladder; a link to a podcast on Acute Kidney Injury; highlights from the KDIGO clinical practice guidelines on the monitoring, management, and treatment of kidney transplant recipients.
  
• Nephron Power  The Feb 2010 issue of AJKD describes an interesting entity of IgA Nephropathy with ANCA presenting with crescentic disease on biopsy; a discussion on fibrotic diseases.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to an interview with Atul Gawande on health care reform and checklists.
• Lemonade and Kidneys has photos of George Clooney.
• The Ballad of Billy The Kidney Stories about two little girls who required organ transplants because of grave injuries received from sitting on the drains of wading pools.
• ....And Bells on Her Toes Kelly addresses a post to her daughter, Caitlyn, in celebration of her third birthday; she uses Davita's Mexican seasoning recipe to make chili for Super Bowl Sunday; Caity gave the cat's whiskers a haircut with the safety scissors.
• Living with PKD Heather sets a goal to do a run-swim-run race in the summer,that's 1K run in the sand, a 1K open ocean swim, and a 5K on the beach boardwalk, regaining her swimming stamina is the biggest challenge for her. (You Go, Girl!)
• Kidney Dialysis News is a new blog to our list. Written by Dr. John, a former research scientist from the UK, he is interested in dialysis because his father died of kidney failure, having been refused dialysis due to being in his late 60's.  His latest post is about the successful transplant of an incompatible kidney.
• Berns on Nephrology In this video blog, Dr. Jeff Berns discusses articles that challenge the widely held explanation for electrolyte homeostasis and suggest a possible new approach to blood pressure control.
• Biologically Safe Water Filters how filtering water that is used to wash burn victims can reduce infections, The Nephros DSU provides a cost-effective method for eliminating waterborne pathogens and providing biologically pure water.
• NephrOnline Blogs In Health Care Beat, Rebecca Zumoff comments on the CMS spending report and its implications for CMS and the renal community.

Dialysis & CKD Blog Report 2/4

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 2/1. 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 notes that a CMS transmittal relating to the Quality Improvement Program makes no reference to bone measures and wonders if this means oral drugs will not be included in the bundle? (Since that last post, CMS has called for a technical expert panel to look at various quality measures, including mineral metabolism, so this may mean that oral drugs are still to be part of the bundle.  Time will tell.)
• Kamal Shah's Blog Kamal is thrilled to learn that NxStage is coming to the Middle East and hopes India will be next; he debugs a problem on his iPhone.
• Kaply, Inc. Tracy would like to write a web comic and is looking for artistic assistance; she looks forward to her first Zipcar rental, may be developing arthritis in her hands, and shares a list of things she doesn't care about.
• Toastiest Toastie thinks Republicans are crazy and that bipartisanship with them is a fruitless endeavor; he wishes people and staff would be quiet during his nocturnal dialysis sessions so he could get some restful sleep.
• The inner game of PKD Richie explores how the metaphors used to describe the experience of PKD can alter one's perceptions.
• The Life of a 20-Something With Lupus Flo's hemoglobin drops to 6.8. she doesn't know why and  is exhausted.
• Becky Perry reviews Beguiled by Deeanne Gist; reviews Never Say Never by Lisa Wingate; has committed to baking more bread at home, has her monthly labs drawn, has excess fluid so she's doing an extra manual PD exchange daily, she wishes she felt better and is tired of feeling tired.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff no longer has BK virus in his blood and his pressure ulcer is better, his sister has gall bladder problems.
• Transplant, Tantrums, & Tiaras Holly got hired to work in a childrens nursery; has been doing more speaking for Live Life Than Give Life and makes a new friend.
• On the Road to a Lupus Cure The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories, the first video is posted here; has updated guidelines for cardiovascular health for women.
• Really, I'm as Old as I Feel? Five inches of snow fall, Rob takes young daughter Abby to a birthday party held at an inflatable moon bounce place; a photo of Abby scaling a moon bounce wall.
• I Am. Are you? The donation mascots are getting together for some special training in preparation for National Donate Life Month in April -- 5 Mascots, 1 Month, 1 Mission...Register Organ Donors.  See the funny video posted.
• The Ins and Outs of Dialysis John has a venogram and an angioplasty.
• Chronic Chick Talk writes about how debt consolidation can be helpful if you lose a job and get into financial trouble.
• Lupus and Humor Carla lists and gives brief reviews of seven lupus books she has read or is reading.
• Bud's Ramblings Bud has had a tough time the last few weeks, he passed out twice and ended up having a defibrillator implanted, then he got pneumonia, but he's doing better now.
• Linda Gromko MD kidneycare Linda tells caregivers to surround themselves with supportive people and stay away from people who sap your energy; Linda starts a four-part series of posts on caregiver burnout. Part One is on the importance of recognizing the signs of burnout; In Part Two she spells out the difference between burnout and depression.
• Precious Bodily Fluids Joel describes a case of someone with the highest aldosterone he'd ever seen, the diagnosis was Gitelman's syndrome; has a table comparing CKD5 mortality rate with some other diseases.
• Renal Fellow Network has a description of how Luminex beads (used in tissue typing labs) work; a post on the actin cytoskeleton of the podocyte; a funny story about a renal fellow and a lab rat; last week's poll results:  who should provide funding for large, randomized controlled drug trials?  Most respondents (58%) chose the diplomatic answer and said that it should be a combination between government and pharmaceutical companies, 24 % thought it should just be government's responsibility, and 7% thought it should be the pharmaceutical industry's.
• UKidney Research performed at UC Santa Barbara points to the drug rapamycin as a potential treatment for polycystic kidney disease; posts Bill Peckham's article questioning urea as a dialysis adequacy marker.
• Nephron Power  has an article on post bone marrow transplant thrombotic microangiopathy  (TMA); a clinical case description and diagnosis; a recent study from Canada in the latest issue of JAMA Feb 3, 2010 talks about the inclusion of proteinuria in CKD staging, they propose subdividing stage 3 in parts -- proteinuria, no proteinuria -- to indicate those at higher risk for CKD5.
  
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article by Jay Parkinson in Business Week: "How to Redesign Health Care;" links to an article that gets 10  healthcare workers perspectives on the new iPad.
• Lemonade and Kidneys Ruth writes she has nothing to blog about...but then tells us she has anxiety at work, a new blood pressure medication, her kids got stellar report cards, and she says she won't permit them to get driving permits unless they learn how to fold laundry.
• Rob and Danielle's Kidney Blog Danielle is scared that Rob will get too sleepy to perform his work duties to the best of his ability on Tuesday and Thursday mornings, after he comes off from his nocturnal HD treatment, she gives a brief description of how dialysis works.
• ....And Bells on Her Toes Kelly is worried when her pharmacy doesn't have one of Alex's immunosuppressives available, tells us how much all the medications cost and hopes their insurance plans will continue to cover them; Alex has his first clinic visit two weeks post-transplant and labs are great, he's starting to feel like a human being again and Kelly is happy.
• Transplant Alliance has an article about a fashion company in Miami; and some weird spam posts.
• Michael W. Newman Michael is going for a breathing test, thinks he has late-acquired asthma, hopes an inhaler will help.
• Berns on Nephrology Tests for PTH levels vary widely in reliability and accuracy. In this video blog, Dr. Jeff Berns cautions about relying on these assays in clinical decision making for patients with CKD.
• Encompass Network Partners Men are more likely to suffer from diabetes-related health problems, according to the American Diabetes Association.
• Renal BizBlog CMS is looking to recruit technical experts by Feb. 17 to meet March 10-11 and develop new quality measures for the End-Stage Renal Disease Program.
• My New (transplanted) Kidney Journey Happiness to Al is a good night's sleep and gut regularity; his labs are fine and he feels good post-transplant, still worries about rejection.
• 3 1/2 Hours of Free Cable Jason got pneumonia but is on the mend, explains the concept of "dry weight" and its importance to the dialyzor.
• I need a kidney Jason wishes that kidney disease got more attention; Jason is getting the "I Wear Your Shirt" guys to publicize his need for a kidney again on the web, he is also exploring new options with his transplant team for transplants that come from people who do not share his blood type. (We wish you success in finding the kidney, Jason,  however you find it.)
• Mushroom's Blog Mushroom is haunted by ghosts from his time at war in Vietnam.

Dialysis & CKD Blog Report 2/1

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/29. 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 that the NxStage is being launched in the United Arab Emirates Dubai, and Saudi Arabia.
• Kamal Shah's Blog Kamal shares photos from his Coorg vacation; Kamal changed his dialysate formula to get more calcium and it has helped his bone pain a little but he's concerned his blood calcium level may get too high.
• Kaply, Inc. Tracy is bipolar and cannot sleep without sleep medicines, when she was in Maine on vacation she got sick and ran out of meds and couldn't sleep which caused her to feel paranoid.
• Toastiest has a photo of icicles at 2:00 AM; a photo of his dog Herman out in the snow.
• Hasten down the wire Some new information regarding software gets Michael to give the iPad a second look.
• The Life of a 20-Something With Lupus Flo is speechless and overwhelmed when two of her classmates offer to get tested as possible kidney donors for her (What wonderful people!); she has a bad cold and uses hydraSense to clear her nose.
• Jack's Kidney Adventure Jack creates an index so readers can find his dialysis and transplant posts more easily.
• Transplant, Tantrums, & Tiaras Holly describes her friend Jess's funeral.
• Chronic Chick Talk posts a music video of a teenage girl playing Bryan Adam's song "I Do It For You."
•  Bud's Ramblings Bud shares some of his pet peeves regarding Southerners who either are embarrassed by their Southern accents and idioms or who mangle them with modern slang.
• Precious Bodily Fluids shares his Grand Rounds lecture on "Uric Acid, Fructose and Hypertension."
• Renal Fellow Network links to the  AJKD editorials on the PPS and gives a brief description of the issues involved in the new bundling; a case describing a PD patient who noted cloudy, deep green dialysate fluid upon drainage of their peritoneum (Serious yuckiness! I would have passed out if my dialysate fluid had come out that color.) It turned out to be Gallstone peritonitis and the color came from bile fluid.
• UKidney has an article on slowing the progression of membranous nephropathy.
• Pediatric Nephrology has a quick review and links to the last several posts, mostly focusing on Disasters and Pediatric Nephrology.
• Nephron Power The renal function in Acute Interstitial Nephritis and glomerular disease with NSAIDS was strongly associated with the tubular interstitial changes more  and inversely related to the amount of immune deposits in the glomeruli.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to Joel Topf's lecture on "Uric Acid, Fructose and Hypertension."
• Rob and Danielle's Kidney Blog When show starts to fall Danielle goes to the market for supplies, deals with some annoying people in the checkout line, drives Rob to nocturnal dialysis, photos and videos of Rob and Danielle playing in the snow.
• ....And Bells on Her Toes Alex is home and resting, his creatinine is down to 205, Kelly is smiling; Kelly has hassles from Home Depot over windows; young daughter Lexie thought that the No Smoking sign at McDonalds meant they served worms on a stick.
• PKD World The impact of some vitamins when taken in high doses; a reminder of World Kidney Day (March 11, 2010); participants are sought for interviews for a research project on altruistic living kidney donation.
• NephrOnline Blogs Mark E. Neumann and Rebecca Zumoff summarize the main points in the AJKD articles on the impact of the PPS bundle.

Dialysis & CKD Blog Report 1/29

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/26. 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 I shared some thoughts about writing the blog report; Bill explains the terms revenue, margin, and profit, figures out how much yearly per patient profit DaVita makes; Peter gives an update on current research on gout and CKD.
• Kamal Shah's Blog On his way to Coorg, Kamal has a splash at a great water park; he enjoys good food, coffee, and plays in a waterfall, wants NxStage in India so he can take longer trips. (Keep nudging them Kamal and maybe it will happen.)
• Kaply, Inc. Tracy considers "alternative" careers...like hired assassin.
• Toastiest has a sweet photo of his dog and cat together in embrace.
• Hasten down the wire Michael is underwhelmed by the new Apple iPad.
• Paddling on Dialysis for Kidney Health Erich finds his resiliency tested by children, the phone repair technician, and an undone clamp that makes a bloody mess, his wife is very resilient, too;  Erich gets brave and has his new trainer do the caliper test, is disheartened that it shows he has 50 lbs. of fat to get rid of (You can do it, Erich.  We're rooting for you.)
• The inner game of PKD How the mind is connected to Polycystic Kidney Disease.
• The Life of a 20-Something With Lupus Flo got some much needed sleep and shares her face cleansing routine.
• Becky Perry reviews Becca By The Book by Laura Jensen Walker;  "Friday Felicities" of things that make her happy.
• On the Road to a Lupus Cure New research shows that people who have both lupus and antiphospholipid syndrome might have a higher risk of thyroid disease;  potential indicators of lupus is being studied in children.
• Really, I'm as Old as I Feel? has an adorable photo of two little girls sharing a spaghetti strand.
• I Am. Are you? Donate Life Ohio launched a new registration initiative called the Green Chair Campaign to increase donor registrations, has a campaign video you can watch; a photo of Morgan D'Organ and friends preparing for National Donate Life Month (April).
• The Ins and Outs of Dialysis John is starting to use his exercise bike again, it hurts and he needs to build up stamina, Gayle recalls earlier bike rides they took together.
• Chronic Chick Talk has a photo of roses.
• Linda Gromko MD kidneycare Linda discusses how important it is for potential kidney donors to stop smoking; Linda and Jane did a webinar for Home Dialysis Central, you will be able to watch it there; Linda explains why "arranging your life when dialysis comes home" matters.
• Renal Fellow Network has a post on glomerular density and predicting progression IgA nephropathy; there was a near 50-50 divide on last week's poll question on whether the surprising election of Republican Scott Brown to the U.S. Senate in the state of Massachusetts was a good or bad thing.
• UKidney discusses various types of vascular mapping studies used to prepare for the creation of an AV fistula or an AV graft.
• Pediatric Nephrology has a new feature on his site that makes it easy to share it with others; links to the article in Nephrology Times  on nephrologists using social networking tools; a report on a young boy who had recurring urinary sepsis post-transplantation, an x-ray revealed a forgotten ureteric stent (Ouch!); links to a NEJM report on some wonderful earthquake relief efforts in Haiti; results from a study on pediatric lupus; results of a renal biopsy audit from the UK; research looking at the rare phenomenon of FSGS in idiopathic membranous glomerulonephritis; a free online tool, called MyBP, that allows one to record, trend, graph,and communicate blood pressures directly to practitioners; a video of Dr. Prasad Devarajan discussing new research in pediatric nephrology.
• Nephron Power  writes about pseudopheochromocytoma, a disease that causes paroxysmal hypertension; A recent article in Kidney International talks about the hypoxia inducible factor or HIF and its relation to kidney diseases and anemia.
• pkdmom2five has a quote "Without love true holiness is impossible;" shares quotes about kindness, fear, patriotism, religion, and hate.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) Alejandro gets caught up in a Kafkaesque bureaucratic nightmare while trying to get his transplant workup blood tests done; in a continuation of this story, two administrative clerks fight over how paperwork should be signed and nearly drive Alejandro crazy.
• Dialysis and Me Barry recommends a great product for stripping paint off plastic models.
• Rob and Danielle's Kidney Blog Rob tries a writing exercise (a brainstorm flow chart) to snazz up his blog entry and ends up connecting "kidney" with "cabinets".
• The Ballad of Billy The Kidney John describes the sale of organs as the worst medical imperialism; links to a research article on the best way to remove bandaids - the slow tug?  or the quick rip?;  John missed Linda Gromko's webinar but concurs with the notion that it's important to make one's home dialysis space a comfortable and inviting place to be, shares some details about how he and his wife set up his dialysis space.
• ....And Bells on Her Toes Kelly is so exhausted that she forgot to get her daughter dressed before putting her in the car; Alex needs to stay another day in the hospital for some tests, Kelly breaks down in tears at the pediatrician's office, she is having trouble managing all she has to do and the stress revolving around Alex's transplant. (Hang in there, Kelly. Alex will be home soon, healing and things will calm down.)
• Michael W. Newman Michael expresses frustration with his pulmonologist who has yet to read and communicate the results of his CAT scan; his doctor finally tells him that the spot on his lung has shrunk, and is not sure what is causing his breathing problems, more tests to follow.
• Biologically Safe Water Filters  explains the cost/benefit to using Nephros dual-stage ultrafilter in dialysis.
• Encompass Network Partners The National Kidney Foundation will open a new office in Reno, Nev. at Saint Mary’s Regional Medical Center; an extensive article on the causes, risk factors, symptoms, diagnosis, and treatment of peripheral vascular disease and peripheral arterial disease.
• Kidney Community Emergency Response The FDA and Edwards Lifesciences notified healthcare professionals of a Class I recall of the Aquarius Hemodialysis System due to reports of clinically significant fluid imbalance and the potential for users to repeatedly override the fluid imbalance alarm. This could result in a decrease or increase in the volume of the circulating blood, which may result in serious injuries or death.
• Libre Clothing has a link to an article on how your heart and your kidneys are connected.
• Kidney Diet Tips has a post about how onions are low in sodium, potassium, and phosphorus so they're perfect for the kidney diet, gives cooking ideas and links to recipes.

Dialysis & CKD Blog Report 1/26

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/23. 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 why urea was chosen to be a measure of dialysis adequacy and why that was a poor decision.
• Kaply, Inc. Tracy had a great birthday and thanks her friends and family for making it so; the day after she got a migraine and her period and slept all day;  wishes Adam Avitable a happy birthday and has a video of him dancing.
• Toastiest Toastie posts a video of Betty White receiving her Lifetime Achievement Award from SAG; he is feeling depressed and unaccomplished and hopes for five hours sleep.
• Hasten down the wire Michael critiques the Supreme Court's ruling on corporate political spending; he adds a new "User experience" section to his website and hopes eventually to publish a book from the entries.
• Paddling on Dialysis for Kidney Health Even though he would rather stay home and write, Erich gets his boots on and goes to the gym.(Good for you, Erich. You inspired  me so I went to my gym, too.)
• The inner game of PKD Richie asks "What does having PKD mean to you?"
• Becky Perry reviews Kelley's Chance by Wanda E. Brunstetter.
• Transplant, Tantrums, & Tiaras Holly picks out flowers for Jess's funeral and receives some pink  jewelry from a friend to wear at the funeral in honor of Jess; had an interview for a job at a nursery, heads off to Kent for Jess's funeral tomorrow.
• On the Road to a Lupus Cure LFA Indiana Chapter President & CEO Phyllis Simko was honored at the 5th Annual Champions of Diversity Awards dinner by Indiana Minority Business Magazine.
• I Am. Are you? Donate Life Illinois is giving away  40 free pairs of tickets to see Josh Turner at a private concert in Chicago on February 11.
• Chronic Chick Talk is having a bad flare up of lupus; has a link to a wedding invitation site to help couples get organized for their wedding.
• Dialyse This A patient has a medical crisis while Cassie was at dialysis, Cassie's 26th birthday is coming up, and possible kidney donors come her way.
• Linda Gromko MD kidneycare Home Dialysis Central is hosting Linda and her colleague Jane McClure for a free Webinar on Wednesday, January 27 at 6:00 p.m. Pacific Time. The topic is "How to  plan your home dialysis space so that your home doesn't look like an ICU?" Register here.
  (They had some great ideas in their book Arranging Your Life When Dialysis Comes Home so I'm sure this will be a helpful, informative webinar.)
• Renal Fellow Network posts the American Society of Nephrology's new logo; figures out how much money a patient is worth to the dialysis companies for a year of conventional dialysis; the potential use of rituximab as a treatment for membranous nephropathy.
• Uremic Frost posts the new ASN logo; an article from the Nephrology Times about the use of social networking media by nephrologists; a video about World Kidney Day (March 11, 2010); a study showed that once-daily administration of sevelamer carbonate powder (Renvela) was not as effective in decreasing serum phosphorus levels as thrice-daily administration of sevelamer hydrochloride tablets (Renagel). Nevertheless, once-daily sevelamer carbonate powder decreased serum phosphorus levels significantly, reaching the KDOQI phosphorus target in most patients; an obese body mass index is associated with an increased risk of kidney stone disease. However, the magnitude of this risk appears to be stable in the morbidly obese population; a horrifying story from Minneapolis about a urologist removing the wrong kidney and taking a biopsy from another's patient's pancreas instead of a kidney. (Yes, he was suspended but if he can prove competency then he can be reinstated.  I hope he never touches another patient again.)
• UKidney Two types of dialyzer reactions. A  mnemonic for them is that "Type A" (the serious one) can be remembered as "anaphylactic", while "Type B" (the less serious one) can be remembered as "boring"; a quick review of the autoantibodies that may be useful in the diagnosis and management of patients with lupus-related kidney disease.
• Renal tsar's blog The NHS has a new publication out to guide UK clinicians in the diagnosis and management of CKD; the tsar finds inspiration rom The Challenge of Co-Production by David Boyle and Michael Harris in thinking about  what analysis and principles should inform radical innovation in healthcare.
• Pediatric Nephrology has a link to a CNN report in Haiti by Dr. Sanjay Gupta about how crush injuries can be deceptively dangerous because of Acute Kidney Injury from rhabdomyolysis; announcement that the next meeting of the American Society of Pediatric Nephrology will be May 1-4 in Vancouver, Canada; a presentation on "Basics of Nuclear Imaging in Nephrology"; a podcast on MYH9 and its role in focal segmental glomerulosclerosis and related disorders; a review on rhabdomyolysis.
• Nephron Power  is a new blog to our list.  It was created by Kenar Jhaveri, MD, and has a number of contributors.  The last two entries posted were: a brief review on hypertensive retinopathy; some points brought out at a recent symposium on IgA nephropathy.
• pkdmom2five posts a lovely photo of her daughter, Victoria.
• Kidney Notes - Exploring the Intersection of Medicine and Technology also links to the Nephrology Times article "Nephrologists Using Social Media."
• Lemonade and Kidneys  Ruth is disheartened when a new CEO is installed where she works and she anticipates that the business will be sold in a year or two.
• ....And Bells on Her Toes On post-op day 3, Alex is confined to bed because he was leaking blood from the incision, but creatinine continues to go down; Kelly hugged Alex's dad (who donated his kidney) and said thank you before he was discharged, Alex gets to go home tomorrow; shares a true and funny story abouta woman who mistook rivets on a truck for Braille.
• PKD World has an extensive list of books and articles about kidney disease and pain.
• Encompass Network Partners Renown Regional Medical Center in Reno, NV announced that on Feb. 10  they will offer Life Line Screening as part of February's "American Heart Month." Life Line Screening is designed to help people identify their risk of stroke, vascular disease and osteoporosis before they suffer catastrophic illness.
• Kidney Community Emergency Response Nipro Medical Corporation, Miami FL, is initiating a nationwide recall of all GlucoPro Insulin Syringes (This does not include the GlucoPro syringe specific for use with the Amigo Insulin pump).These syringes may have needles that detach from the syringe. If the needle becomes detached from the syringe during use, it can become stuck in the insulin vial, push back into the syringe, or remain in the skin after injection.
• Renal BizBlog has links to a series of columns (from the American Journal of Kidney Diseases)  that explores how the pending bundled payment could change the dialysis landscape.
• Michael W. Newman Michael's oxygen saturation test was okay, and he has noticed less breathing problems when he takes prednisone, he awaits lung CAT scan results.
• My Wife Has Lupus Cellcept gives his wife terrible headaches and Imuran causes stomach flu symptoms, they hope the doctors can come up with some alternative immunosuppression.

Some Thoughts From a Blog Reporter

By Miriam Lippel Blum

This is my 100th post on DSEN, so I thought I would mark it with some reflections on the blog reports I write.  I work on the report at home, usually when I myself am on hemodialysis.  I use my laptop and type with the one hand not immobile because of needles.  Every three days I enter the worlds of the 114 people whose blogs grace DSEN's master list.   I report on whomever has new posts since the last time I visited and summarize what they have to say. 

It is an emotional journey sometimes, for the entire spectrum of life with CKD is represented here, and often written about with graphic detail and brutal honesty.  There are people with polycystic kidney disease, lupus, FSGS, diabetes, and other chronic conditions.  Every kind of renal replacement therapy is represented: peritoneal dialysis, conventional hemodialysis, home hemodialysis, nocturnal hemodialysis (in both home and in-center settings), and, of course, transplants.

There are people here waiting for transplants, people who are getting transplants, people who are living well with their transplants and people who are losing the precious gift of life they received.  There are caregiving family members here who write about the difficulties and stresses of that role.  There are young people here, single people, married people, married with families, and retirees. All united in that they live every day with the burden and challenge of CKD in their lives.

And sometimes they don’t want to live, or find it extremely difficult to live the life they might have but for CKD5.  Some are in chronic pain, distressed and depressed and their blog is where they cry with their words.   Some people find ways to live and be joyful despite their disease issues, some travel, still others take on the role of coach to help guide fellow sufferers using their own coping mechanisms as examples.

Then there are the renal physicians who blog and graciously share their medical knowledge, questions, and scientific updates. A few industry blogs are on the list giving a view into the business side of dialysis that deeply affects our quality of life.

It’s all here, the varied voices of the renal community, full of hope and despair, dreams and nightmares, triumphs and frustrations. 

I have become rather attached to “my bloggers.”  I find myself cheering at their joys and successes and feeling sad for their losses.  The hardest thing is when someone has no new posts for many months or even years and I wonder if they have died.  I quickly check on those, too, because I never know if this will be the day when they will return.

The blog report is my way to help dialyzors connect with others, and to provide access to information.  I feel I give bloggers access to more readers than they would otherwise have, and what blogger doesn’t want an audience?  Thank you, bloggers, for putting yourselves out there and sharing your thoughts.  I consider it a privilege to enter your worlds and report on them. And thank you, Bill, for letting me contribute in this way.

Dialysis & CKD Blog Report 1/23

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/20. 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 announces that the Northwest Kidney Center's (NKC) Breakfast of Hope is slated for May 12, he also found an extended video on the NKC You Tube page from when he was the honoree; Bill discusses issues both moral and financial involved in the situation with Grady Hospital in Atlanta and the dialysis assistance being  given to Haiti.
• Kamal Shah's Blog Kamal plans a trip to Coorg to relax and visit the coffee plantations.
• Kaply, Inc. Tracy shares insights about her cats, Marie Osmond, music, and the fact that her birthday is tomorrow. (Happy Birthday, Tracy! And many more.); Tracy celebrates "Tracymas"  by eating noodles and being showering with well wishes from friends.
• Toastiest expresses frustration with the Democrats in Congress; shares a musical piece and will give a gift card to whomever is the first to identify the artist and the song title; thinks Conan should get a show on HBO.
• Paddling on Dialysis for Kidney Health Erich starts exercising at a gym and hires a personal trainer to assist.
• The inner game of PKD Richie writes about what keeps a PKD patient up at night. (I'm sure these apply to most people with serious chronic illness.)
• The Life of a 20-Something With Lupus Flo gets fitted for a mouth-guard because she clenches her teeth and finds unexplained bruises on her wrist.
• Becky Perry shares a template for her To-Do list; shares Friday Felicities; describes her dialysis supplies inventory and procedure.
• On the Road to a Lupus Cure New research shows that immunosuppressents render flu vaccination less effective in people with lupus.
• Really, I'm as Old as I Feel? Rob has an awkward moment in the mall while trying to explain potty training techniques.
• I Am. Are you? has a photo slideshow of the Donate Life float at the Rose Parade.
• The Ins and Outs of Dialysis Gayle shares some facts about Medicare and dialysis  coverage, links to an article entitled "I Love My Socialist Kidney."
• Chronic Chick Talk finds that being in a pool helps her chronic pain, wishes she could have a warm therapy pool in her home; Fill it in Friday tidbits; suggests not setting yourself up for failure when you try to lose weight, has a link to a helpful diet resource.
• Lupus and Humor Carla was disappointed with lab test results but for now is continuing her routine of low dose naltrexone, dietary changes, and chi gung to control her lupus flares, she doesn't want to take prednisone again.
• Dialyse This Cassie got a cramp during an xray and has been sore all day, her grandma bought her Season 2 of Bones.
• Linda Gromko MD kidneycare Linda describes how music has been a healing and motivational force in her and Steve's life and suggests that caregivers find music that resonates with their heart and souls and speaks to their challenges.
• Precious Bodily Fluids Joel is reading Atul Gawande's book The Checklist Manifesto and finds it has implications for his medical practice.
• Renal Fellow Network Poll results from last week:  The majority of individuals felt that it was definitely unsafe giving gadolinium to CKD5 patients, with 45% of individuals also agreeing that it was unsafe in CKD stage 4; the effects of interferon on the kidney.
• Uremic Frost reports about a Taiwanese man who got over-excited while watching Avatar in 3D and suffered a stroke.
• UKidney has a helpful video summarizing the mechanism of ion transport in the kidney and and the impact of diuretics on these processes; a Japanese research study shows that parathyroid gland enlargement may delay the response of secondary hyperparathyroidism to cinacalcet (Sensipar).
  
• Pediatric Nephrology has a post on nephrogenic systemic fibrosis; the use of Dilantin in dialysis patients; announcement of a pediatric nephrology seminar, Mar. 11-14 in Miami, FL; has link to the new Davita Diet Helper website.
• ....And Bells on Her Toes Alex gets his Dad's kidney, there are initial complications due to the large size of the kidney, but after some more surgical intervention the kidney "pinks" and makes some urine.  He's in Recovery and Kelly is waiting to see him; Kelly's feels like she's on an emotional roller coaster, first things looked bad for Alex's transplant but later a doctor reassures her that the kidney is working and Alex's creatinine and potassium levels have dropped, he is still sedated and drifting in and out.
• PKD World Describes plans for a scenic drive through England, France and Italy for the the 2010 PKD Charity Tour.
• Encompass Network Partners has an extensive article on peripheral arterial disease; the Scholl College of Podiatric Medicine in conjunction with Rosalind Franklin University of Medicine and Science hosted the 23rd Annual Dance for Diabetes to donate to the American Diabetes Association to help fund research on preventative medicine and education on diabetes; the importance of vascular screenings to catch silent circulation problems.
  
• Kidney Community Emergency Response has more links for getting help to Haiti.
  
• NephrOnline Blogs Mark Neumann writes about the difficulty in diagnosing acute kidney injury in Haiti because of lack of testing and other supplies. He gives a list of needed supplies and contact links to help.
  
• Kim Hoben's Blog Kim feels that allowing substandard care in dialysis is inhumane; she has had it with someone somewhere deciding that they will give the masses enough dialysis to keep them alive but not enough to live. (We all agree with you.)

Dialysis & CKD Blog Report 1/20

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/17. 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's analysis of a NY Times op-ed by Kristoff shows that dialyzors can be happy; Bill critiques Dr. Richard Amerling's depressing article on the future of US healthcare, finding it full of factual inaccuracies and misleading conclusions; Bill reports how alleged practices by DaVita in regard to epogen utilization are damaging to the entire CKD community.
• Kamal Shah's Blog Kamal's nephrologist is perplexed regarding Kamal's bone pain, wants to wait to see if it improves and consult a neurologist; Kamal's phone runs out of power at an inopportune moment so he can't get directions to a dinner party. Luckily, a security guard with a phone comes to the rescue; Kamal has an epiphany about the source of the bone pain, validates it with Dr. John Agar, and goes about correcting the problem. (We hope this solves it soon and forever.)
• Kaply, Inc. Tracy is slowly recuperating from the chest cold she got while on vacation.
• Toastiest shares a photo of Aremid, his 15-year old cat; is so disappointed with the Democrat's loss in Massachusetts, finds politics depressing; posts pet pictures to cheer himself (and the rest of us) up.
• Hasten down the wire Michael wonders whether the NY Times' second attempt at constructing a paywall for online content will be better than its first try, which was a dismal failure; Michael reports on how the FBI illegally obtained phone records.
• Paddling on Dialysis for Kidney Health Erich finds that his strenuous exercise plan is slowed by a low hematocrit, he's getting iron and EPO to address the problem and uses motivational quotes to keep his focus.
• The inner game of PKD Richie shares a number of concepts, practices, and  “mind games” that he used to cope with the challenges he faced with PKD.
• The Life of a 20-Something With Lupus Flo spent the day sleeping and now, as she procrastinates before setting up for her nocturnal dialysis treatment, she wonders if she can paint her nails while having buttonhole needles in her arm. (I wouldn't recommend it.); has a post about her bald spots and how she is going to treat them. (Flo, bald spots or not, you are a beautiful woman.)
• Becky Perry reviews The Judas Ride by Peggy Sue Yarber; reviews  A Lady Like Sarah by Margaret Brownley.
• Jack's Kidney Adventure has a link to an article about what the renal community is doing to help dialysis patients in Haiti.
• Transplant, Tantrums, & Tiaras Since she feels life is short, Holly has decided to complete 101 preset tasks in a period of 1001 days; a list of her 101 tasks.
• On the Road to a Lupus Cure Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities; Saturday, January 23, is the Kick-Off for the 2010 Walk for Lupus Now event in San Diego.
• Really, I'm as Old as I Feel? shares a cute photo of his young daughter ready to pilot an airplane.
• I Am. Are you? Donate Life Illinois reached their goal of getting 8000 Facebook fans in 8 days.
• The Ins and Outs of Dialysis Gayle took up knitting as an activity to do while John is on dialysis. She asks, "How is knitting like dialysis?"  The answer: Two big needles connected by cables, one needle pushes, the other one pulls.
• Dialyse This Cassie is delighted to find out that all her transplant blood work and ECG could be done through the dialysis unit.
• Bud's Ramblings Bud went to breakfast with his sister and brother-in-law, put away the Christmas tree, and hopes his defibrillator never has to go off.
• Linda Gromko MD kidneycare Linda suggests that both caregiver and dialyzor find something - anything - that renal failure has taken away - and make a valiant effort to reclaim it; congratulates Steve on completing his cardiac rehabilitation program, writes about the importance of exercise for people with diabetes and CKD5; Linda's mom has a medical scare and ends up in the hospital on her 92nd birthday; Linda recalls the events leading up to her marrying Steve and wishes him a Happy Anniversary - she would do it all again despite the CKD5 struggles.  
• Precious Bodily Fluids shows how to properly determine Dilantin levels in a patient on dialysis; links to an article about the demonization of high fructose corn syrup; a photo of a doctor at an  Antarctic research post surgically removing his own appendix.(Well, the penguins weren't gonna do it!)
• Renal Fellow Network discusses the ethical dilemmas associated with care of the undocumented CKD5  population; links to an article that helps determine the molecular basis of Thyrotoxic Periodic Paralysis in many (but not all) cases, and characterizes this disorder as yet another example of a channelopathy: a disorder of ion channels; the use of bortezomib in the management of myeloma cast nephropathy.
• UKidney has a description of the peritoneal equilibration test (PET) which is a standardized method for assessing peritoneal membrane function, and is used for tailoring an appropriate, individualized PD prescription; a Swiss study uses glycyrrhetinic acid, a compound commonly found in licorice, to lower dangerously high potassium levels. 
• Renal tsar's blog The tsar clarifies clarifies some issues regarding pneumococcal vaccinations in patients with CKD; he makes it clear and in no uncertain terms that twice a week dialysis is insufficient and unacceptable (Three times a week isn't really acceptable either but two is definitely not enough.); refers people to a kidney dialysis quality report now available on the UK Department of Health website; the NHS Kidney Care finally unveil their Kidney Care website and the tsar likes it.
• Pediatric Nephrology has a link to the Kidney Community Emergency Response Coalition;  an article about the Automated Wearable Artificial Kidney.
• pkdmom2five shares a quote from Oswald Chambers: "God who made the birds never made bird cages. It's men who make bird cages and after a while we become cramped and can do nothing but chirp and stand on one leg."
• Dialysis and Me Barry has a photo of the hobby desk his father-in-law made him for Christmas.
• Rob and Danielle's Kidney Blog Rob feels well so he and Danielle go on a bike ride with friends through a park; Rob posts a nostalgic piece he found about childhood in years past, although he and Danielle are considering adoption so as not to pass PKD genetically, Rob is glad his parents had him and he learned to persevere as he watched his Dad's struggles with CKD.
• ....And Bells on Her Toes Kelly found a good snow plower, Alex feels better and goes out with the boys to party before his transplant; Kelly realizes how much the family tension regarding the surgery is affecting her young daughter, Alex is going to participate in the post-transplant study regarding diabetes; expresses gratitude to Alex's father who is giving him a kidney.
• Encompass Network Partners  A few of the biggest players in the medical devices arena are accused in a whistle-blowers lawsuit of promoting the off-label use of biliary stents to treat cardiovascular disease in hundreds of thousands of patients. (This seems to be a pattern in companies -- see Bill's post on DaVita's problems.)
• Libre Clothing shares some exercise ideas to help stave off diabetes which is the #1 cause of renal failure; links to an article about how the dialysis community is helping in Haiti.
• Kidney Diet Tips How the DaVita Diet Helper, an online tool, can help you keep your 2010 resolutions.
• Michael W. Newman The doctor found spots on Michael's lungs, more evaluation needed so the oxygen saturation test is canceled.
• LightLizard's Lair reflects on how the impact of past wars echoes in his life and choices.

Dialysis & CKD Blog Report 1/17

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 1/14. 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 excerpts 23 comments regarding Medicare's PPS submitted by dialyzors using home hemodialysis to show how successful more frequent dialysis is at controlling symptoms and normalizing life for those with CKD5.
• Kamal Shah's Blog Kamal describes the isotope bone scan he underwent, results showed "Metabolic bone disease", now back to his doctor for continuing consultation.
• Kaply, Inc. Tracy lays out the plan for her birthday celebration and requests pictures from all her  loyal readers of whatever you are doing on "Tracymas."
• Toastiest posts a video of Johnny Carson's last TV appearance; watched an iTunes movie at dialysis to help him fall asleep, was awoken by machine alarms at 4:30,AM.
• The inner game of PKD Richie describes his post-transplant experiences.
• The Life of a 20-Something With Lupus Flo worries that a potential professors strike at her university will upset her education schedule,  her previously fractured foot is giving her pain; she struggles with fragile black hair; she is sleepy, worries about getting bloodwork done for fear that it will show there is something wrong.
• Becky Perry lists four things that make her happy.
• Transplant, Tantrums, & Tiaras Holly posts pictures and thoughts about her friend, Jess, who died last week; Holly continues to grieve.
• On the Road to a Lupus Cure Tips for starting and sticking to an exercise routine.
• Chronic Chick Talk posts a music video "Beauty from Pain" by Superchick; she is amazed at how fast baseballs are thrown during games.
• Bud's Ramblings shares a column written by a friend about lessons learned from burnt biscuits.
• Linda Gromko MD kidneycare Linda posts an update on Steve's transplant status - they hope for a living donor with blood type A or O.
• Precious Bodily Fluids Joel shares a humorous e-mail he received from a patient.
• Renal Fellow Network Last week's poll shows that Up To Date is the most commonly used current reference system for rapidly obtaining nephrology knowledge by renal fellows; a post discussing pre-op cardiovascular testing for kidney transplant recipients.
• Uremic Frost has the Renal Physicians Public Policy in a Minute video.
• UKidney has a post about staghorn calculi which are are upper urinary tract kidney stones which involve the renal pelvis and involve at least two of the calyxes; Baxter Corp. faces numerous lawsuits over harm caused by tainted heparin; an article about the status of the wearable artificial kidney; in a retrospective CKD-inception cohort study, there was no association between hyperphosphatemia and death, though there was less risk of renal replacement therapy in patients with better phosphorus control. A suggestion is made that there should be a randomized study to confirm the relationship between hyperphosphatemia and death, if it is so.
• Pediatric Nephrology has a link for physicians to contact if they can help treat a few Haiti earthquake victims at their centers; a link to ASN's list of relief organizations for Haiti; responsibilities of a nephrologist during earthquakes;  Acute Renal Failure - History; Rituximab is now considered an alternative therapy for refractory lupus, lupus nephritis, and vasculitis but there is no evidence supporting its use in routine care for remission induction or maintenance, nor in primary glomerulonephritis; a study investigates the genetics of reflux; a study on masked hypertension and LVH in children with CKD2 -4; a link to a review article in AJKD on post-transplant lymphoproliferative disorder; a powerpoint on the basics and techniques of various forms of CRRT.
  
• pkdmom2five Life is going well for Amy and her family, she reconciles with estranged friends, and loves the freedom of expression she has with her blog, gets positive feedback from others.
• Lemonade and Kidneys shares some of the stories she didn't get around to blogging about last year: her dog's new girlfriend, new solar panels on her house, and a new ring; a photo of George Clooney; two local scandals have Ruth wondering why people waited so long to take action.
• Rob and Danielle's Kidney Blog Rob struggles with low blood pressure while on nocturnal dialysis, his doctor prescribes a new medicine that doesn't seem to help.
• Mid-life ramblings Dianne celebrates losing weight,  having had no hospital stays in a year, and having her daughter visit over Christmas; she is amazed by a young newlywed couple who are assisting and blogging in Haiti.
• ....And Bells on Her Toes Kelly and Alex get colds from their kids. Kelly worries that Alex's transplant (five days away) might be delayed if he can't recover quickly.
• Encompass Network Partners Pathway Medical Technologies, Inc announced that the FDA has granted the company clearance to market JETSTREAM G3™ which is a peripheral revascularization catheter designed to remove all kinds of artery-clogging plaque in the lower limbs of patients. This minimally invasive solution clears blockages in the peripheral vasculature, restores blood flow and effectively treats Peripheral Vascular Disease; a rise in endovascular treatment for Peripheral Arterial Disease seems to be related to rates of amputation and mortality falling, even though patients seem to be sicker upon presentation.
• Kidney Community Emergency Response American Society of Nephrology (ASN) encourages individuals and organizations interested in contributing financial support to donate directly to entities specifically dedicated to providing disaster relief to Haiti, gives links; more links for information about disaster relief in Haiti.
• NephrOnline Blogs DaVita raises the question as to who is responsible for deaths caused by tainted heparin, they or Baxter who made the stuff?
• Nathan's PKD Nathan celebrates his three-year kidney-versary, no signs of rejection, his labs are great, his bone scan was unchanged, his cardiologist is retiring.(We wish you many more great kidney-versaries!)
• Michael W. Newman Michael sees a new pulmonologist who orders an overnight 0₂ saturation test, and may also want to do a sleep study that Michael thinks is unnecessary. He doesn't want to protest for fear he will be dropped as a patient and there are few other physician choices in his community.
• Life on Dialysis Samiir takes the bus to dialysis and nearly blacks out, notices later that there are seats reserved for physically disabled people and wonders why there are no seats for people who might have a non-visible disability like CKD5 who might need them just as much on a long bus ride.
• Mushroom's Blog Mushrooom received a US flag from Sen. Dianne Feinstein that was flown over the Capitol in memory of his deceased son, Jeremy, whose donated kidney lasted 17 years.

Dialysis & CKD Blog Report 1/14

By Miriam LIppel Blum

To the bloggers on our list (and other folks reading DSEN) who are interested in transplants, this might be of interest to you.  A Webinar is being offered by the Living Donor Kidney Network (LKDN).  The webinar, titled  "Having your Donor Find You," is being offered on 2 different dates, Tuesday, February 2nd and then again on Monday, Feb. 8th at 8:30pm EST (7:30pm CST, 6:30pm MST, and 5:30pm PST.)

This webinar is perfect for people in need of a kidney transplant who want to learn more about living kidney donation and how to communicate their need to friends and family.  If there is someone that wants to help them spread the word about their need, their advocates, ask them to sign up for the webinar, too.  To register for one of the Webinars, click here.  For more information see the website for LKDN.

Here are the CKD related blogs updated since my last report on 1/11. 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 the importance of the Northwest Kidney Center's Kidney Research Institute and their successful funding efforts; the NxStage worked great on the cruise,Bill suggests some improvements that would make it even better; Bill critiques Sally Satel's review of Observing Bioethics by Renee C. Fox and Judith P. Swazey.
• Kamal Shah's Blog Kamal's bone pain is getting worse and his nephrologist orders yet another test. (We're sorry to hear that and hope this test will show something that can be helped.) Despite the pain,  Kamal looks into some travel and cruise opportunities.
• Kaply, Inc. While in Maine, Tracy got scratched up by her brother's kitten.; she is still recovering from vacation and her cough, her cable box is malfunctioning...and she declares her birthday a national holiday (It's Jan. 23rd. We' promise to celebrate with appropriate confections.)
• Toastiest Toastie is frustrated with being unable to sleep on in-center nocturnal HD and considers returning to a daytime shift; his 14-year old cat, Aremid, is slowing down and unable to jump as he used to, photos of Aremid.
• Hasten down the wire Michael gripes about the iPhone and new technology, in general.
• Paddling on Dialysis for Kidney Health  is a new blog. To celebrate and mark his 10th year on dialysis, ten years of life, Erich is going to get into shape so he can join the Grand River Expedition 2010 which will lead scientists, educators, local officials, river enthusiasts and at least one fellow on dialysis from its headwaters near Jackson, Michigan to Lake Michigan at its mouth in Grand Haven 225 miles downstream. He will also be soliciting donations for the National Kidney Foundation of Michigan; his Wii Fit video game and his son make him face his obesity head-on.
• The inner game of PKD Richie describes his transplant surgery.
• The Life of a 20-Something With Lupus Flo returns to the grind of school and work.
• Becky Perry reviews and excerpts The Last Day by James Landis; describes her schedule for keeping up with home maintenance, her family assists; shares her menu for the week.
• Jack's Kidney Adventure links to a story about the wearable kidney.
• Transplant, Tantrums, & Tiaras Holly mourns the death of her friend, Jessica Wales, whose lung transplant came too late. (Our condolences to you and her family on your loss.)
• On the Road to a Lupus Cure Belimumab (also known as Benlysta™) effectively treats lupus flares over a four-year period.
• Really, I'm as Old as I Feel? has a photo of daughter, Abby; Rob tries to shampoo Abby's hair and discovers the bathwater is too cold.
• I Am. Are you?  has photos, a video, and a recap of Donate Life Illinois' event at the first of  a year-long series of shows they’re supporting for US99’s “live country” concerts.
• The Ins and Outs of Dialysis Gayle goes to Spokane to visit her beloved 93-year old mother.
• Chronic Chick Talk has been feeling discouraged, awaits a big delivery; suggests taking a course at Online Colleges for work advancement or personal fulfillment; her lupus struggles have given her appreciation of the small joys in life, like her daughter's smile. (These may be small moments but they are big joys.); might be a spectator at but is not interested in riding a bull, ever.
• Dialyse This Her doctor heard the radio interview  and now wants to track down her blog, got a rash from the sticky pads used during her stress echo.
• Renal Fellow Network has a differential diagnosis of Granulomatous Kidney Disease; reports on some promising potential therapy for Polycystic Kidney Disease.
• Uremic Frost has a video about what the National Kidney Foundation does; a study shows that HD patients have a higher risk of colon perforation during colonoscopy; a study shows that angiotensin receptor blockers are linked to lower dementia risk; an FDA panel voted not to recommend approval of nebivolol (Bystolic) for the treatment of chronic heart failure.
• UKidney Dan Rather reported on HDNet a story entitled "Kidney Pirates" about the dark world of black market kidney trafficking.
• Renal tsar's blog Transportation to dialysis in the UK gets better and expects continued  improvements; Case studies from two UK dialysis units provide a guide for salvaging “reject water” that in most units is needlessly “lost to drain” to be put to alternative use in hospital laundry or sanitation systems to provide steam for equipment sterilization or to feed low pressure boilers;  a link to an NHS Renal newsletter; Commissioning for Quality and Innovation (CQUIN) payments may have a positive impact on quality of care for Acute Kidney Injuries.
• Pediatric Nephrology links to Renal Fellow Network's differential diagnosis of Granulomatous Kidney Disease; announces Kamal Shah's new website Dialysis in India; a video about NanoDialysis, another wearable kidney in development.
• History of Nephrology Important discoveries about Acute Kidney Failure were made during the bombings in the Battle of Britain, seventy years ago.
• pkdmom2five has a quote about the damage caused by living without love; and a quote about evil caused by religious conviction.
• Lemonade and Kidneys Ruth considers divorcing her husband because he uploaded the score to Les Miserables to their son Quinlan's digital music device, and Quin has abandoned his nascent adolescent broodiness in favor of singing "Master of the House" all over the house at the top of his lungs.  . (I suggest you start playing Susan Boyle's version of "I dreamed a dream" very loudly in response or maybe something from Phantom of the Opera.)
• Rob and Danielle's Kidney Blog Danielle makes a plea for a kidney for Rob out of Scrabble Cheez-Its.
• ....And Bells on Her Toes Kelly's husband, Alex, is getting freaked out about the idea of having a catheter and stent inserted for five days after his upcoming kidney transplant; family stress is affecting the behavior of their young children, Alex considers participating in a study that hopes to reduce the risk of diabetes post-transplant with lower steroid and immunosuppressive levels, all the forms and literature scare Kelly, she is also feeling overwhelmed with the copious transplant details, expected followups, and hopes that the drugs will be covered by their Canadian insurance.  She feels like she needs a good cry.
• Living with PKD Heather is off to Boston for a 24-hour urine collection marathon at Beth Israel Hospital, likes Boston but it's too cold there now.
• DailyHemo - Home Dialysis Advocates New Videos: Avera Medical Minute - Living On Dialysis; Kidney Disease A Death Sentence? Can Dialysis Extend My Life?; Working While On Dialysis - Patient Success Stories; As A Dialysis Patient Caregiver, What Will Dialysis Be Like For Me?; National Art Contest for Children With Kidney Disease; Davita Teammates Donate Teddy Bears; E-Learning Gives Dialysis Kids Laptops and Equipment; Peritoneal Dialysis in Young Children; Gurdip Singh On Dialysis and Very Active.
• Encompass Network Partners has an article about the symptoms and treatment of Peripheral Arterial Disease.
• Kidney Community Emergency Response posts a news bulletin about the earthquake in Haiti.
• Renal BizBlog Keith comments on and links to a scary editorial by Richard Amerling about what he fears the triple threat of recession,  healthcare reform, and the new bundling rule will bring: clinic closings.
• Kidney Diet Tips announces that Davita's Phosphorus Challenge is coming soon. It will provide education about phosphorus by featuring games, quizzes, polls, points and social networking with others who are taking the phosphorus challenge.
• Nitey Nite- a nocturnal dialysis blog vents frustration regarding dialysis clinic social workers, considers having another kidney transplant; shares two renal related websites she thinks are worth looking at: Dance for Donors and All Kidney News.
• Renal PatientView Blog has updated the info on their Liver Function Tests and verified it with liver experts.

Dialysis & CKD Blog Report 1/11

By Miriam Lippel Blum

Welcome back to Bill and the rest of the NxStage Freedom Cruisers.   May this be the first of many more adventures out in the world.  You have shown that dialysis need not preclude one from exploring interesting places.

Here are the CKD related blogs updated since my last report on 1/8. 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 On Day 6 of the NxStage Freedom Cruise, Bill goes snorkeling at Cozumel and later enjoys sunning on the beach, video of the beach; on Day 7 the seas were choppy as the Cruisers headed back to Miami, Bill posts a nice video summarizing the trip and reflects on how with a higher dose of dialysis and a NxStage machine enjoyable travel is possible; Bill writes that foreign travel on dialysis is an obtainable dream and to prove it lists all the places he has traveled as a dialyzor (an impressive list), he has a personal goal of visiting 50 countries and six continents. ( I'm convinced you will reach that goal.); Bill writes of an unpleasant encounter with a Miami-Dade county employee who gave the Freedom Cruisers' cab driver a hard time unnecessarily. (She deserves a reprimand for conduct unbecoming an officer.  I hope you'll report her to the appropriate authorities. Despite that, it sounded like a wonderful trip.)
• Kamal Shah's Blog Kamal would like to set up a support network of dialyzors in India  (he sees Lori Hartwell's Renal Support Network as a model) and asks for help;  Kamal has created an online website forum called Dialysis in India, it has sections that offer basic information, sections that offer his perspective on well-being and leading as normal a life on dialysis as possible and a forum where people can share problems specific to India, any helpful feedback would be appreciated. (Bravo, Kamal, for starting this.  No doubt there is a need for this and you will find the support you need as you assist others through your site.)
• Kaply, Inc. Still sick and coughing, Tracy made it home to Seattle and got loving attention from her friends and her cats.
• Hasten down the wire Michael is angry that Obama has flip-flopped on the issue of taxing health insurance benefits; a critique of a column by NY Times writer, Robert Lowenstein, wherein he suggests people walk away from mortgages when the value of their property has dropped lower than the mortgage.
• Becky Perry shares a personal story of religious faith and the birth of her son.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease Jeff gets an ulcer on his foot as a result of Charcot-Marie-Tooth Disease, he chooses conservative treatment right now but foot surgery may be in his future.
• Jack's Kidney Adventure In his first post of the new year, Jack celebrates good lab results and gives thanks for all the medical people who help support him. 
• Transplant, Tantrums, & Tiaras Holly feels helpless as her friend Jessica struggles for life after a double-lung transplant.
• On the Road to a Lupus Cure Lupus Foundation of America's Advocacy Day on Capitol Hill is March 15-16, 2010. Help educate Members of Congress about lupus, and encourage them to support more funding for lupus research.
• Really, I'm as Old as I Feel? Rob describes the upside of being married to a teacher.
• I Am. Are you? Having reached their goal of 7,000 Facebook fans, Donate Life Illinois increases their goal to 8,000.
• Lupus and Humor Carla is taking low dose naltrexone to help reduce lupus flares,  along with her gluten-free diet, no nutrasweet, and faithfully doing chi gung.
• Dialyse This Cassie posts a link to her radio interview; answers some questions about her blog; dreams of having a magic sci-fi hand-held device that will cure everything (Don't we all?), gets ready for her annual transplant workup.
• Bud's Ramblings shares Robert St. John's essay "My South."
• Linda Gromko MD kidneycare After reading Bill's posts on the NxStage Freedom Cruise, Linda and Steve are ready to sign up for the next one, shares a NxStage travel anecdote of her own; recommends films for inspiration and lists some that she and Steve like.
• Precious Bodily Fluids gives a link to a free service that will allow one to unlock downloaded PDF files so you can copy from them.
• Renal Fellow Network has a post on the three main mechanisms by which hypercalcemia of malignancy can occur; hydrothorax in PD patients; how too handle carotid stenosis (a major risk factor for stroke)  in patients with CKD and CKD5.
• UKidney has a Wall Street Journal article "The Meat Market: Tackling the Organ Shortage;" a case report of a kidney transplant in a bone marrow transplant patient; the Chinese herb Aristolochic acid can cause a severe form of interstitial nephritis, also patients with aristolochic acid toxicity are also prone to developing malignancies of the urinary tract (e.g. bladder cancer).
• Pediatric Nephrology has his Pediatric Grand Rounds compilation of posts; a case report on aHUS and Factor H S119L mutation; long term PD and encapsulating peritoneal sclerosis.
• pkdmom2five announces a music night at her church.
•  The Ballad of Billy The Kidney John shares some funny words of wisdom from his young goddaughter to end 2009 and wishes all good health for 2010; a profile of Jimmy Little, indigenous Australian country singer, actor, teacher and philantropist who received a kidney transplant in 2006 following 2 years of home dialysis.
• ....And Bells on Her Toes Kelly talks to the Transplant Coordinator to iron out some details in preparation for Alex's transplant; her daughter gets the stomach flu and must stay away from Alex whose transplant operation is pending.
• PKD World announces a free webinar tomorrow (1/12 at 8PM ET) on "What causes pain in PKD and what can you do about it?" Presenter is Dr. Ted Steinman, a Clinical Professor of Medicine at Beth Israel Deaconess Medical Center and Harvard Medical School .If you miss it, recorded version will be available here; an article on how to treat kidney cyst pain; an article on a revolutionary new operation that can 'cure' high blood pressure.
• DailyHemo - Home Dialysis Advocates New Video: Mom Gives Kidney to Daughter.
• Encompass Network Partners Researchers in Canada are recommending that people over age 40 be screened for peripheral arterial disease (PAD); people should talk to their doctor if they have difficulty with walking and develop pain or discomfort in the calves or legs that get better with rest. This symptom -- called claudication -- is angina in the legs and puts you at risk of heart attack; a patient survey shows deficiencies in footcare of diabetic patients on dialysis.
• Libre Clothing announces the winner of the "Share Your Story" contest.
• NephrOnline Blogs In the Health Care Beat blog, Rebecca Zumoff writes about the upside-down nature of our healthcare spending.  In particular, the penny wise pound foolish actions of cutting poor immigrants off from dialysis care only to have them end up in the ER later for more expensive care.

Dialysis & CKD Blog Report 1/8

By Miriam Lippel Blum

Well, now that 2010 has begun, I can tell that a lot of bloggers resolved to get back to updating their blogs with a vengeance, so there's lots to share and read.  I particularly recommend reading  Bill's posts on the Freedom Cruise adventures for fun and inspiration for what is possible.

Here are the CKD related blogs updated since my last report on 1/5. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle  Bill continues blogging the NxStage Freedom Cruise. Bad weather at Cayman Island canceled snorkeling plans but he and his mom had fun shopping,  playing golf and going on the ship's water slide.  His treatment went well but he adjusted therapy fluid bags to accommodate boat movement that threatened to bowl over the machine;   next he describes a reception hosted by NxStage where the cruisers were greeted by NxStage CEO Jeff Burbank and  got to hear about some of the new data being developed to support the efficacy of more frequent dialysis; Day 4 took them to Isle Roatan, Honduras.  Bill took a zip-line tour of the jungle canopy and posts a video to give us a taste of it; Day 5 brought the Cruisers to Belize where they explored ancient temples. There are links to photos and NxStage's cruise blog.  Also, Bill finds that there is even more storage in his ship cabin and contemplates a longer cruise next time.
• Kamal Shah's Blog After hearing Indian politician Amar Singh,  say that he got a transplant because he felt like dying when on dialysis, Kamal reflects on his own and other dialyzors' situation and wonders why we continue struggling and going on day after day.  Is it that we really want to live or that we are more afraid of death? (I can't speak for others, Kamal, but I dialyze to live, fully realizing that some day, like the rest of humanity, I will die. I still find that the struggle is worth the effort.  Reading about the Freedom Cruise gives me hope and inspiration to find the things, places, and people that give me joy and seeking them out, as I can, when I'm not dialyzing.); Kamal is proud that his Telugu language skills are gradually improving.
• Kaply, Inc. Tracy is stuck in Maine with a really nasty chest cold.
• Toastiest Toastie was able to change insurance plans (What a relief!  We hope your transplant plans come to fruition.); a game show video; some early photos of his cats.
• The Life of a 20-Something With Lupus Flo successfully resolved problems with a hotel bill.
• Becky Perry has book reviews and peeks into the first chapters of Sydney's DC Discovery (Camp Club Girls #2) by Jean Fischer;  Raising a Modern Day Princess by Pam Farrel and Doreen Hanna; Love Finds You in Holiday, Florida by Sandra D. Bricker; Becky reminds that you don't have to be dead to donate a kidney,  posts contact information for the transplant programs she is registered with; shares an article that summarizes the impact that CKD has on the body.
• On the Road to a Lupus Cure The Lupus Foundation of America announced new funding for research grants to address issues of critical importance for people with lupus; guest blogger Wendy Rodgers writes about her Rose Parade float experience.
•  I Am. Are you? has a video from a donor family event, A Day of Hope and Remembrance; photos of the Donate Life Rose Parade float; puts out a challenge to try to get 7000 fans on their Facebook page in 7 days.
• Chronic Chick Talk had a tooth extraction; lessons learned from a friend's moving experience; a gift of leg warmers from her Dad warm her inside and out; her daughter likes to play the boxing game using the Nintendo Wii; some Friday Fill-Ins; loved working at the skilled nursing facility, enjoyed bringing comfort to the residents and families she met there.
• Dialyse This Cassie has a few minutes of fame when her radio interview airs and she buys a USB modem so she can have internet access while on dialysis. (Every unit should have wifi, if you ask me.)
• Linda Gromko MD kidneycare Linda discusses the use of "anecdotal medicine" in addition to "evidence based " medicine in medical practice, and the importance of common sense; to save time and sanity she makes "kits" that contain the supplies needed for each daily dialysis treatment; Linda says bringing dialysis home is like bringing home a new baby...but you don't get a baby shower to help out. She makes helpful suggestions of resources to check out for support and ideas.
• Renal Fellow Network describes the mechanism by which insulin resistance causes sodium retention and hypertension; results from last week's poll were that the most appealing Nephrology Consult scenario was workup of new-onset glomerulonephritis.
• Uremic Frost  Amgen Inc. and Johnson & Johnson face a review of their top-selling anemia drugs by an advisory panel for the U.S. Food and Drug Administration; has a link to a clinical article of interest to nephrologists in the New England Journal of Medicine.
• UKidney Differential Diagnosis of Hypomagnesemia; FDA will do a safety review of anemia drugs from Amgen and Johnson & Johnson; Keryx Biopharmaceuticals Inc. has agreed with FDA regulators about the design of clinical studies for its drug candidate Zerenex, which treats high levels of serum phosphorus in people with CKD5.
  
• Renal tsar's blog The tsar shares his goals for the year ahead:   raising the profile of acute kidney injury so that it gets on every healthcare professional’s radar and every healthcare organization’s agenda; driving the data into knowledge initiatives that will support improved quality and outcomes for people with kidney disease and promoting shared decision making which he believes is at the core of high quality personalized care planning for long term conditions.
• Pediatric Nephrology Requests donations for Pediatric Kidney Foundation, a non-profit organization, whose chief objective is to provide support to children with renal diseases and create awareness for the same; article on the limitations of dual x-ray absorbtiometry; questions to ask when evaluating a child with nocturnal enuresis (bed-wetting); the history and epidemiology of urolithiasis; a link to a Powerpoint presentation on acute renal failure by Dr. Joel Topf.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) Alejandro writes about an Argentinian celebrity who died while awaiting a lung  transplant.
• Lemonade and Kidneys Ruth and her husband have 100,000 frequent flier miles and are dreaming about where to go with them.
• ....And Bells on Her Toes Kelly's husband, Alex's transplant date is set for two weeks from now. He is getting a kidney from his father, Kelly is hopeful and terrified at the same time.(We all send good thoughts his way for a successful surgery and rapid healing.)
• The inner game of PKD Richie continues telling his PKD story with how he got his transplant.
• DailyHemo - Home Dialysis Advocates New Videos: World Kidney Day, 2010; How Many PD Boxes? Wow!
• Encompass Network Partners shares link and information about My Access Site which is a new online community to bring together dialysis patients and their supporting friends and families.
• Kidney Community Emergency Response links to an article in Renal & Urology News on disaster preparedness.
• Libre Clothing gives a link to an article with tips for dialyzors on winter storm preparation.
• NephrOnline Blogs in the Health Care Beat blog, Rebecca Zumoff lists three attainable New Year's goals for 2010 that the renal community and the Medicare ESRD program should reach for.
• Renal BizBlog has a link to a Fresenius article that offers advice for patients to prepare for this year’s winter storms.
• Phoenix27 wishes a Happy New Year and looks forward to a more positive and prosperous year.

Miriam's Websurfing Find:
This is a fun site to check out if you like to listen to books on tape.  LibriVox provides free audiobooks from the public domain. There are several options for listening. The first step is to get  the audio files into your own computer

LibriVox was started in August 2005, by Hugh McGuire, a Montreal-based writer and web developer.  LibriVox was once called “perhaps the most interesting collaborative cultural project this side of Wikipedia.” They are the most prolific audiobook publisher in the world, putting out 70-100 books a month and have a catalog of 2,100+ books, in 29 languages. All driven by the passion of thousands of volunteers around the world who love books.

LibriVox volunteers record chapters of books in the public domain, and then release the audio files back onto the net for free. Since all their audio is in the public domain, you may use it for whatever purpose you wish.

If you'd like to participate, volunteering for LibriVox is easy and does not require any experience with recording or audio engineering or acting or public speaking. All you need is a computer, some free recording software, and your own voice. They accept all volunteers in all languages, with all kinds of accents. You don’t need to audition or send voice samples. They’ll accept you no matter what you sound like.

Dialysis & CKD Blog Report 1/5

By Miriam Lippel Blum

The launch of the 2010 Freedom Cruise is spreading hope and inspiration (and some jealousy) through the Dialysphere. Several bloggers have mentioned or linked to it through DSEN or the NxStage site. It is getting dialyzors to dream of future cruises and other travels that might be possible with NxStage. Keep posted  to DSEN for future Freedom Cruise updates.

Here are the CKD related blogs updated since my last report on 1/2. 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 reflects on the barriers that American medicine puts up that deter optimal dialysis in this country; Bill takes off on the Freedom Cruise with a group of NxStage dialyzors; Bill takes us on a video tour of his boat cabin and how he organized his dialysis supplies; a report on the 2nd day at sea, with a  link to a video about Jeff and Susan who celebrated their 25th wedding anniversary on the cruise. (Congratulations!  What a great way to celebrate.)
• Kamal Shah's Blog Kamal writes about the launch of the Freedom Cruise and how much it inspires him; describes some of the inner workings of constructing an iPhone application.
• Toastiest is concerned he won't be able to change insurance policies because the HR representative has been out of the office.
• The Life of a 20-Something With Lupus Flo posts photos taken in the dialysis unit she went to in Florida.
• Becky Perry reviews The Silent Governess by Julie Klassen and shares the first chapter; posts the first chapter from Faith That Works:A Topical Study of the Book of James by Anne Fortenberry.
• On the Road to a Lupus Cure Belimumab (also known as Benlysta™) reduced lupus disease activity and flares, as compared to placebo in Phase III clinical trials.
• I Am. Are you? recaps the Donate Life float in the Rose Parade, it won the award for Theme Trophy for Excellence in presenting the Parade Theme, “A Cut Above the Rest.,” a link to TV footage of the float so you can see it in the parade.
• Dialyse This learned that vodka gives her heartburn.
• Renal Fellow Network The basics of PD prescription writing; a description of familial juvenile hyperuricemic nephropathy; a differential diagnosis of hypomagnesemia.
• Uremic Frost has the top 10 nephrology stories of 2009 from Renal Business Today.
• UKidney A study from Norway suggests that CKD5 patients older than 70 years old who receive a renal transplant experience a significant improvement in survival compared with remaining on dialysis.
• Neophron's Senescence has a satirical music video critiquing Senator Joseph Lieberman.
• pkdmom2five has some landscape photos and welcomes a new member of her church.
• Lemonade and Kidneys shares delicious photos from the holidays.
• ....And Bells on Her Toes is having trouble potty training her three-year old.
• The inner game of PKD In Part 5 of his "Struggles of a Polycystic Kidney Patient," Richie describes his early dialysis sessions.
• DailyHemo - Home Dialysis Advocates New Videos: Taking Dialysis on a Sea Cruise; NXStage Freedom Cruise - Typical Cabin on Sea Cruiser.
• Encompass Network Partners Statistics on lower leg amputation in the United States.
• Libre Clothing is starting sales later this month, contact them if you have any ideas you would like to see in their dialysis clothing line, they welcome suggestions.
• Bridge of Life shares a thank-you note and photos from the medical director of FUNDANIER - the Guatemalan Foundation for Children with Kidney Diseases.
• Transplant Alliance Gail is having chronic rejection and wonders if she'll get a second transplant.
• PKD & Dialysis ... Where I Tell It Like It Is Da Grandma is feeling tired, wonders whether she should continue blogging but sometimes likes looking back at old posts.

Dialysis & CKD Blog Report 1/2

By Miriam Lippel Blum

As the year turns, many of the CKD bloggers reflect on the state of their health, joys and disappointments. You may find some inspiration in here for your own struggles or, perhaps, just validation that you are not alone.

Here are the CKD related blogs updated since my last report on 12/30. 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 links to a news story about Freedom Cruisers Susan and Jeff; NxStage will be blogging cruise updates, as will NxStageUsers.
• Kamal Shah's Blog Kamal has a quick review of his health, work and life in 2009; meets and compares notes with another dialyzor who only dialyzes twice a week and has no comorbidities, Kamal wonders whether all the work he does to manage his disease is worth it.(We're all different, Kamal, and must deal with the cards we are dealt.  Your friend is fortunate. Your efforts to take care of yourself and manage your CKD5 are worth it. We're glad you're here and hope that your condition improves.)
• Toastiest Toastie spends New Year's Eve with his pets, feels he didn't accomplish what he had hoped for in the last decade, posts photos of high points for balance.
• Becky Perry writes a short review of her health and dialysis in 2009, now she's back on the PD cycler at night with one exchange during the day and that is working better for her.
• Transplant, Tantrums, & Tiaras Holly had a quiet Christmas, visited her grandmother, best gift was the double-lung transplant for her friend, Jessica; reviews the first lines of all her 2009 blog posts; answers a list of questions about her life in 2009; reviews her last year's goals and sets some new ones for 2010; Holly reflects on her last five years since her diagnosis of kidney failure.
• On the Road to a Lupus Cure reviews lupus advances in 2009 and lists the Lupus Foundation of America's accomplishments.
• Really, I'm as Old as I Feel? Rob reviews 2009 by taking the first sentence from the first post of each months blog entry, welcomes 2010, and notes that he kept his resolution from last year to not eat a doughnut for the whole year, but hopes to have one at brunch on New Year's Day.
• I Am. Are you? Donate Life Illinois wishes all a Happy New Year and reminds everyone to look for the Donate Life float in the Rose Parade.
• The Ins and Outs of Dialysis John and Gayle did dialysis on New Year's Eve and post a great photo to prove it, they resolve to stay healthy in 2010 and get more exercise.
• Linda Gromko MD kidneycare Linda writes about how important it is for caregivers to take care of their own health needs, too, and she makes sure to see her primary care physician, as needed.
• Renal Fellow Network Results from last week's poll, nephrology fellows won the "hardest working fellow in show business" award (No big surprise there.); while in Paris, he stumbles across a plaque commemorating one of the key steps in the invention of ureteroscopy and cystoscopy, has a photo and a link to a free article on the development of the modern cystoscope.
• UKidney A study shows that pre-dialysis transplant recipients with a high level of kidney function do not appear to benefit from their transplant more than pre-dialysis recipients with a low level of kidney function; a differential diagnosis of red urine.
• Pediatric Nephrology A study shows higher mortality among pediatric CRRT patients with fluid overload; announces the 6th International Conference on Pediatric Continuous Renal Replacement will take place in Rome on April, 10, 2010; a study showing that Sevelamer carbonate from Genzyme Co. can be an alternative to Renagel as a phospate binder.
•  Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) shares some thoughts that help him put dialysis in a positive light.
• Neophron's Senescence flew an F-16 in a computer simulation with a friend, shares photos from that and family at Christmas.
• pkdmom2five reflects on how the difficulties of 2009 helped her and her family grow spiritually.
• Dialysis and Me shares his list of resolutions for 2010.
• Kidney Notes - Exploring the Intersection of Medicine and Technology links to an article by a physician about what he likes in modern medicine and what he doesn't like.
• Rob and Danielle's Kidney Blog have a new photo at the top of their blog of Rob asleep while  dialyzing with their puppy in his arms.
• ....And Bells on Her Toes hated 2009 and hopes 2010 is better, wishes she could fix all that's wrong; shares some amusing antics of their young daughters.
• The inner game of PKD Richie describes his transition to dialysis.
• Biologically Safe Water Filters has an article on endotoxin control for portable reverse-osmosis machines.

Dialysis & CKD Blog Report 12/30

By Miriam Lippel Blum

Tomorrow night the year will turn bringing us 2010. I hope it brings you all joy and health. I hope it brings wise decisions by our leaders. But whatever it brings, let's all continue working towards the betterment of our health and the world. And for goodness sakes, have some fun, too! Happy New Year! Here are the CKD related blogs updated since my last report on 12/27. 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 Bill is going on the NxStage Freedom cruise and posts a news video about Pat & Ralph, another adventurous couple who are also going (Bon Voyage to all the NxStage cruisers! Enjoy your freedom and the independence that optimal dialysis with NxStage can bring. We look forward to photos and stories to enjoy vicariously.); the blog report. 
• Kamal Shah's Blog Kamal plays a rowdy family game of Taboo and an ordinarily quiet relative really got into the game; a description of Kamal's morning swim routine.
• Toastiest Toastie may have a possibility for a kidney transplant and discovers that his insurance policy has a clause that disallows payment for a transplant with an unrelated living donor, he may be able to change policies. (This is unconscionable! Has it not occured to this insurance company how much a transplant would save over perpetual dialysis? I hope you can change policies.)
• The Life of a 20-Something With Lupus Flo describes her last day in Florida which included dialysis, Dairy Queen, mall shopping, and flea markets. She also makes a point of saying that she looks forward to going home to her nocturnal dialysis because in-center, three times a week treatment leaves her not feeling well. (It's a big difference. I wish more people who do conventional in-center HD knew how much better they could feel with more dialysis.)
• Transplant, Tantrums, & Tiaras Holly's friend, Jessica Wales, gets a double lung transplant.
• On the Road to a Lupus Cure New research shows that urine components may indicate the severity of lupus nephritis possibly allowing for diagnosis without a biopsy in the future; how you can help promote Julian Lennon's album "LUCY" and raise funds for Lupus Foundation of America.
• I Am. Are you? has a quick look back at some Donate Life Illinois highlights from the past year.
• The Ins and Outs of Dialysis John and Gayle had a great Christmas with their grandchildren and dressed up like Santa Claus, photos.
• Dialyse This Cassie is into Rock Banding/Guitar Hero-ing and decides she needs a new TV.
• Linda Gromko MD kidneycare Steve gets a new Primary Care Physician and Linda explains the importance of having one.
• Renal Fellow Network lists some complications of erythropoietin use.
• Uremic Frost has a chart showing the top causes of death in 2006-2007. No change is seen in a primary renal cause which remains number 9 in the top 10; a CDC study shows that since 1996, the rate of diabetes-related CKD5 has declined.
• Pediatric Nephrology has posts on the role of intradialytic parenteral nutrition; the differences between animal and human models in Acute Kidney Injury; photo and information about Renal Angiomyolipoma; a CKD5 patient finds a kidney donor through Facebook; links to Bill's post about the Freedom Cruise; therapeutic strategies for Encapsulating Peritoneal Sclerosis; a study on the risk of exit-site infection following topical mupirocin and sodium hypochlorite application.
• pkdmom2five has links to some articles about courtship vs. dating for religious Christians; lessons about dress and appearance.
• Dialysis and Me shares videos from Christmas eve - JoJo the Boxer enjoying her new bone, nephew unwrapping his Transformers gift and family having a wrapping paper ball battle; a review of video game "Fairy Tale Fights"; Dialysis Guy (video) reviews "Avatar" and relates Christmas activities; a video of Barry making a Warhammer model.
• Rob and Danielle's Kidney Blog Danielle made Rob a banana split for dinner (Yum, I want one, too!); a potential kidney donor for Rob turns out to be the wrong blood type but Rob is still grateful for the offer and prays that a matching donor will come his way sometime.
• ....And Bells on Her Toes bought a 54" plasma TV at the Boxing Day sales.
• The inner game of PKD Richie continues his PKD story with descriptions of his early symptoms and EPO injecting.
• Michael W. Newman Michael's dialysis unit is understaffed again, an unacceptable situation that must be addressed.
• Unfiltered Hope Darren continues to heal from his kidney transplant, he and Sara are busy with life and grateful.
• Encompass Network Partners has an article explaining why many diabetic foot amputations are preventable and what can help.
• Renal BizBlog DaVita CEO Kent Thiry says why he's nervous with the healthcare legislation and its possible ramifications on dialysis care.

Dialysis & CKD Blog Report 12/27

By Miriam Lippel Blum

Here are the CKD related blogs updated since my last report on 12/24. 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 Bill posts a graphic from National Geographic's blog that shows how the US compares to the other developed nations in terms of dollars spent and life expectancy...the US spends more than twice the average yet is below the average for life expectancy.  Bill thinks the US healthcare system is perverse. (I agree with you.)
•  Toastiest Toastie rates the movie "500 Days of Summer"  -- it made him feel terrible and he hated it.
• Birdman Sparrow posts a silly (and slightly deranged) animated Christmas video; his wife saved his life when he was unconscious from low blood sugar.
• The Life of a 20-Something With Lupus A stranger tries to enter Flo's hotel room, all is later resolved (it was the manager) and she goes shopping by the beach;  had a great time at Disney World and Epcot Center, has dialysis at 7AM tomorrow morning. 
• Jack's Kidney Adventure Jack gets some sort of flu and has to go to the ER to make sure his new transplanted kidney is okay, it is and he recovers in a couple of days; enjoys time at a B&B in Columbus.
• Transplant, Tantrums, & Tiaras has a photo of Holly sporting a winning smile in her Santa hat.
• Linda Gromko MD kidneycare Linda and Steve love movies. went to see Invictus and found inspiration in the same poem that helped Nelson Mandela persevere despite adversity.
• Renal Fellow Network discusses the association between phenytoin and hypocalcemia.
• Uremic Frost Excerpts from an interview with DaVita's CEO Kent Thiry where he discusses his view on the current healthcare legislation and the company's explosive stock growth; because of patent infringements, the U.S. District Court in Boston issued a permanent injunction barring Roche from selling Mircera in the United States, but a licensing agreement with Amgen will allow it in mid-2014; a study shows that day napping and short night sleeping were found to be associated with a higher risk of the development of diabetes.
• UKidney posted a discussion of skin problems in chronic kidney disease; an argument as to why KT/V may not be the best measure of dialysis adequacy; researchers in Boston have identified the genetic cause of focal segmental glomerulosclerosis which mat eventually lead to treatment; a new study finds that the gap between supply and demand for donated kidneys for transplant is widening in Canada.
• Pediatric Nephrology has his  Pediatric Grand Rounds with links to the articles highlighted from the last two weeks.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) In response to a commenter's accusation about improper care at a Fresenius unit in Argentina, Alejandro researches the matter and meets with Fresenius representatives at their Buenos Aires headquarters for an explanation.
• pkdmom2five has a wonderful Christmas, including tamales, a church service, family, football, and movies.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to an article that logged all the sleep interruptions experienced by a  patient in the hospital during a 12-hour period;  a link to an article with tips on how to get what you need from your doctor.
• ....And Bells on Her Toes describes how her young daughter wakes up the family in the morning.
• Jenna Franks Jenna was able to get home after 27 hours in 4 countries, as the snow in Europe created many delays. She and mom, Karol, had a great Christmas together.
• DailyHemo - Home Dialysis Advocates New Video: Fresenius Medical Care Dialysis in Chicago.
• Transplant Alliance Barb wishes everyone a Merry Christmas.