Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 3/15

By Anna Bennett

I am going to start today's blog report with a comment.  I have learned a lot in the past three years of being in CKD5 and being active on the internet.  The most important thing for me is to LIVE and celebrate our survival, when I was in center at DaVita Life Care, when I was at home on NxStage and now with my transplant. 

These blogs below are people sharing their lives with us, we can gain insight, encouragement and friendship here in cyberspace. World Kidney Day is not just about advocacy, it should be a time to celebrate our survival and remember those who have gone before us.  Watching Who Lives? sitting next to Bill and his mother, near Karol and others who I have met along the way was a highlight, my CKD Christmas and Thanksgiving rolled into one, for that, I am truly grateful.  And for those of you who wanted to be there but couldn't be, well, you were there with us in our hearts.

Now, on to CKD related blogs updated since Bill's update on 3/11. If you have or know of a blog that should be on the list let Bill know.

• Dialysis from the sharp end of the needle Our biggest week EVER. Peter, Rich and Bill along with many many comments; The petition, the Play, ER, Bill's trip to Houston, the blog is growing
• Kamal Shah's Blog the petition; Dynastic politics; World Kidney Day
• Kaply, Inc. supply delivery screwups (I reallly feel your pain!); Housing inspection stress
• Toastiest has nothing to say (I've had those days - really I have - ok, maybe not...)
• CHRONIC POSITIVITY - Life with Polycystic Kidney Diseasea catch all post of updates, things are good, taking time off from second job, wife in a better position, sister better, taking stock on life's random details
• Stayin' alive props to Who Lives? (maybe we could find a copy of the script - Bill is pretty well connected! - I wonder if they will videotape?  Unions may not allow); A new endeavor writing Historical Fiction (sounds exciting)
• Hasten down the wire survival of Journalism, two posts on single payer health insurance; the costs of private insurance; rational fear of layoffs (a lot of brilliant writing to digest - I'll be back to re-read)
  
• The Life of a 20-Something With Lupusthe need for self set up dailysis machine (Bill is right there with you, Cairny can't do it, he'll bite through the saline bags and he dosen't have thumbs - or fingers...for those of you who are new, Cairny is Bill's dog, not an amputee); multiple choice tests
• Nitey Nite- a nocturnal dialysis blog a very nice looking dialysis chair for nocturnal treatments
• Living Out Loud mother got the call; a meme; World Kidney Day
• Jack's Kidney Adventure wakes up in bed next to his wife and realizes that he has to pee (that is the definitive sign that your transplant was a success, you are at home and peeing and peeing and peeing, we'll be hearing more for this, the next chapter of Jack's Kidney Adventure.  And let me be the first to say WELCOME back to the world of Urinators)
• Life on dialysis ... and now life after my transplant! a very special liver transplant; donor desks for donor day; filming advocacy day
• On the Road to a Cure a great turnout for advocacy day
• I Am. Are you? a very effective Donor Registration commercial - showing a child on in center dialysis
• Kevin’s Blog Kevin's personal testimony when volunteering at a rescue mission
• Chronic Chick Talk writer's block; The importance of taking control of your own medical care
• Dialyse This dialysis demolition day with a picture of what it would look like if Dialysis machines took over the world(I LOVE IT and Big Ben in the background); complaint about nurses who pull permcaths
• Bud's Ramblings tests,tests, tests and more tests then dialysis. (I hope all is well, and this is just precautionary)
• Disability Prejudice And Civil Rights Watch a very scary story of a misdiagnosis; the petition; the arrests in the enabling of Anna Nicole Smith including over prescribing and medical ethics violations
• Renal Fellow Network thiazide diuretics (A very common family of diuretics used for hypertension therapy)- could increase risk of diabetes; refeeding syndrome
• The Nephrology Blog TAKE CARE OF YOUR TEETH "Patients with moderate-to-severe periodontal disease had a 5-fold increase in CVD death after an 18 month follow up" (CVD is Cardio Vascular Disease); a Japanese Study done on only Japanese men studying creatinine and diabeters
• Diario de diálisis Crónicas, reflexiones y sentimientos de un paciente que comenzó un tratamiento de diálisis (In Spanish)  Journal dialysis - Chronicles, thoughts and feelings of a patient who started a dialysis treatment (Google translated from Spanish) He takes Argentina's misnistry of health to task for not promoting preventative renal medicine and NO MENTION of World Kidney Day (shame on them); WKD is promoted by Argentine Society of Nephrology and Fresenius
• Bondservant Diary original mountain music of Appalachian America (now my soundtrack for the rest of the blog report!); an infected permcath; the loss of a friend from the unit; the petition;World Kidney Day
• Neophron's Senescence question what is the worst job you ever had?  His answer:  Selling Movie star maps on Sunset Boulevard (we were just there even worse job? - the celebrity impersonators on Hollywood Boulevard)
• pkdmom2five new haircut; World Kidney Day
• Mid-life ramblings family and a picture controversy (I say leave it up, dialysis does not define us, but it does keep us alive and should not be hidden); taking stock in what does define her
• PKD World World Kidney Day
• The Ballad of Billy The Kidney World Kidney Day and the petition
• Berns on Nephrology looks at the excess use of tunneled dialysis catheters
• Biologically Safe Water Filters Home kits (not dialysis related)
• Kidney Community Emergency Response FDA Alert: Colleague Single and Triple Channel Volumetric Infusion Pumps by Baxter recalled
• Renal BizBlog World Kidney Day
• Kidney Diet Tips Kidney Diet on a Budget - Helpful hints and links
• Living with PKD home from a cruise

Dialysis & CKD Blog Report 2/22

By Anna Bennett

CKD related blogs updated since Bill's last update on 2/20. If you have or know of a blog that should be on the list let Bill know.

• Dialysis from the sharp end of the needle Bill responds with concern about financial motivation for transplant donation; Dialysis hits prime time television (forcing Bill to wrench himself away from the internet and watch television)
• Kaply, Inc.fathead arrives, Kaply is overwhealmed with need for sleep and recovery from a cold (I hope that you get better or at least your brother can make you chicken soup)
• poetry on dialysis observations on the people in the clinic (read Stacy without an e - bitterness is universal), life is Spain as compared to life in the USA
• The Life of a 20-Something With Lupus the verdict on hot Yoga - will do again (Sweating is good.  The skin can do a tiny bit of the kidney's work - and that is less fluid that you'll have to pull off, and Yoga is good for you)
• Nitey Nite- a nocturnal dialysis blog (we welcome a new blog to the report), posting after the first month of in center nocturnal.  A few adjustments and an overall thumbs up
• Living Out Loud a meme
• Jack's Kidney Adventure a new binder (Renvela) and new icky nausea
• Strnad Family Digest  back at work after transplant, it is official
• Renal Diet Corner updated renal diet handouts
• Transplant Alliance NY Hep C Awareness Day (Hey, that is why my NYC unit was shut down!)
• Kevin’s Blog a post and a picture from Kevin's brother, his living donor (now that is brotherly love.  He should be expecting GREAT Christmas and Birthday presents from now on)
• Chronic Chick Talk picking a web host, seeing the Dr about hurt wrist
• Dialyse This comments on the ER episode
• Mushroom's Blog a great post about abortion, written with a long history of personal observations; really sweet birthday pictures
• Bud's Ramblings removing a shocking 5.6 K (That is not good! see fluid removal post); in closing a poem/Nursery Rhyme
• Disability Prejudice And Civil Rights Watch PTSD, chronic illness and perception; institutional living in its various forms
• Precious Bodily Fluids relearning what he learned in his renal fellowship and facing ACUTE dialysis truths, dissecting an article about a long term multi facility ACUTE study, including editorial rebuttal; (remember CKD5 sufferers, - the goal of treating acute CKD5 is reversal.  In chronic CKD5 (which the majority of us have), it is survival and quality of life. Although the diseases are treated similarly, the outcomes cannot be compared and should not be confused)
• Renal Fellow Network why permcaths should only be a temporary access
• Renal tsar's blog facing the epidemic of MRSA and Hep C, how UK units are fighting the battle
• Bondservant Diary  perils of buying a lightweight wheelchair; recommends a TV show "Corner Gas"
• Neophron's Senescence Kona Hawaii (envious sigh)
• Waiting for a transplant an equal rights reality slap/blog post (well said)
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney.... graft day #2, a fan of Atavian and Percocet
• Mid-life ramblings a day to do what she wants - no demands on her time

Dialysis & CKD Blog Report 2/16

By Anna Bennett

It is my turn to do the blog report (no Scrabble losses involved).  Here are the CKD related blogs updated since Bill's last update on 2/12. If you have or know of a blog that should be on the list let Bill know. The parentheticals are my comments.

• Dialysis from the sharp end of the needle we welcome NxStage Road Warrior Harvey Wells to DSEN; Bill starts a dialogue on immunosuppressives and healthcare to treat the person, not just the disease; Bill suggests medicare financial incentives; the comments have been busy (keep 'em coming)
• Kamal Shah's Blog beware the "Healthy Alternative" (not so healthy); appreciating talent; Gatte ki sabzi (looks delicious); year round bananas are under appreciated.  (I am eating a banana with my oatmeal as I type this)
• Kaply, Inc. cell phone frustration; kitchen class part two; awaiting the arrival of Fathead (I hope that you have a great time)
• poetry on dialysis continued poetry for Valentines Day. Poems about about clotting, walking and dialysis.  From the Dialysis poem: "i have shut my eyes against the world and my blood is returning form a remote place where it has gathered some nameless, terrifying beauty." (Once again, Vidal has written something that makes me stop and say WOW)
• Stayin' alive a glucose monitoring tattoo (all the cool kids are getting them); an honest post about access to transplant. (Is there any way that you can switch to NxStage?  It has better outcomes than in center dialysis - you'll feel better and have more control over your life)
• Hasten down the wire the vulnerability of the Internet (I don't see it as "the sky is falling" I see us as a society that has become dependent on electronic communication and entertainment - what will be the effect if that is taken away?)
  
• The Life of a 20-Something With Lupus making the effort to stay fit even when dealing with a chronic disease
• Living Out Loud Menu plan Monday; book recommendation and life's bits and pieces
• Jack's Kidney Adventure a busy Valentines Day that ends with watching the Godfather
• Strnad Family Digest a 13 week transplant update, all's well, now back to work
• Life on dialysis ... and now life after my transplant! the busy life of a transplant advocate - (and it involves cookies!)
• Let us Consider One Another upcoming travel, and good dialysis
• On the Road to a Cure ways to stay informed with the Lupus Foundation of America
• Really, I'm as Old as I Feel? a six word love story for Valentine's Day (I wonder what my six word love story would be?)
• I Am. Are you? a basketball half time donate life appeal; ask the organ donor expert
• Transplant Alliance Billy Joel and Elton John are coming to Philadelphia
• Chronic Chick Talk updating window blinds
• Bud's Ramblings the things you see (but would rather not see) at the Mall
• Renal Fellow Network end of life decisions/palliative care (please cite your data when quoting mortality numbers)
• The Nephrology Blog Still in clinical trials - BUT A new drug called Avosentan may help to slow diabetic kidney disease; hypertensive kidney disease;combination drug therapy; a Happy Valentines day video clip
• Renal tsar's blog World Kidney Day - What are YOU planning? (Bill is going to LA to see Who Lives?); a very cool Monthly Update from the NHS Renal NSF (UK's Renal National Service Framework)
• Bondservant Diary looking forward to starting NxStage training; a DSEN cross post of Harvey's NxStage Adventure; Sheila's dialysis travel
• Waiting for a transplant a one year memorial; making friends and bonding because of kidney disease (a beautiful post as a testament that something good can come out of a terrible disease and a lovely picture)
• Stiiiiiiiiiiiiiiiiiill hoping fractional Birthdays; and Happy Valentines Day and President's Day
• Phoenix27 "Spend Valentine's Day with someone you like"  (My favorite quote of the day!  And roses are expensive and overrated)
• PKD Blog - Life with Polycystic Kidney Disease a  post for help with navigating the system when you don't have Insurance (a good resource - Thanks!)
• DailyHemo - Home Dialysis Advocates RIP Willem Kolff
• Biologically Safe Water Filters an AP article on Legionnaire’s bacteria found in Atlanta
• Kidney Community Emergency Response Links to a CellCept Warning Manditory Medication Guide (that woke me up!)
• Renal BizBlog Nurse Walks 9 Miles in Snow to Save Dialysis Patient (spoiler alert - she doesn't work for DaVita)
• Living with PKD bored; Facebook junkie

Dialysis & CKD Blog Report 1/31

By Anna Bennett

After a brief but sweet winning streak in Scrabble, I am back to the Saturday Blog Report. These are the CKD related blogs updated since Bill's last report on 1/29. If you have or know of a blog that should be on the list let Bill know.

CKD Blogs Updated in the Last Month

• Kamal Shah's Blog demographics and terrorism on the Indian subcontinent
• Toastiest an annotated photographic history of fistula (wow)
• The Life of a 20-Something With LupusTGIF, dialysis alarms strike; studying hard (it is worth it)
• Becky Perry photographic memories of children growing up
• Jack's Kidney Adventure a grief anniversary; high Ph, low BP; frustrating health care providers
• On the Road to a Cure a grant to study Lupus Biomarkers with video
• Really, I'm as Old as I Feel? January thankfulness
• Transplant Alliance new web store
• Charlottesville Prejudice And Civil Rights Watch a Pete Seeger video (makes me smile); It is time to move (Home is where the heart is)
• Renal Fellow Network renal damage from lithotripsy (it can also damage the pancreas as well)
• Diario de diálisis Crónicas, reflexiones y sentimientos de un paciente que comenzó un tratamiento de diálisis (In Spanish)  Journal dialysis - Chronicles, thoughts and feelings of a patient who started a dialysis treatment (Google translated from Spanish) dialysis on vacation at the beach. (sigh, the picture is beautiful)
• Bondservant Diary a great post on salt and potassium
• pkdmom2five Taco Bell and a car show
• Lemonade and Kidneys Send mojitos and Demerol, and stay tuned (my favorite line of the week)
• Stiiiiiiiiiiiiiiiiiill hoping someone can spare a type A or type O kidney....fistula surgery over

Video Blog

• DailyHemo - Home Dialysis Advocates lots of videos

Personal Health: Should we be looking backward?

By Anna Bennett

Bill forwarded me the government's Family Health Tree. 

From the news/press release:

The AP (1/13, Neergaard) reports, "A good family health history is far more important than a gene test in predicting" people's "future medical needs, but it's hugely underused." Therefore, starting today, "the government begins offering a free new service to try to change that -- helping people compile one at home, email it to relatives who can fill in the gaps, and even pop it straight into their doctors' computers." Genetics experts can use these family health trees to "look for patterns of inherited illnesses that can provide a powerful window on someone's brewing health risks." Data from the Centers for Disease Control and Prevention indicate that "fewer than 30 percent of Americans have ever collected health information from relatives to compile one."

After working with the program for an hour, here are my thoughts:  Our tax dollars paid for this.  At a time when there is an epidemic of obesity, diabetes, high blood pressure, inactive lifestyle, poor eating habits...  the list goes on.  We as a nation are not properly addressing our personal health.  I think that the family health tree has missed its mark.  It encourages people to stay on the internet and delve into past generations,  rather than get out of the chair and take a walk. We need to know what diseases are prevalent in our genetics, but it need not be a tax dollar funded undertaking.

I write this as a second generation PKD afflicted person in CKD5.  Knowing that my mother had PKD was enough, I have no need to trace back generations to see who's genetic mutation is to blame.  Science has brought us genetic testing (still controversial) and excellent diagnostic medicine. We don't need extensive genealogies replacing a proper medical history done by a trained physician.

The money spent on developing the Family Health Tree could have been an incentive to get phys ed back in schools.  Or fund grass roots community blood pressure/education clinics.  Because today's overweight child with type II diabetes sitting at home playing Nintendo is tomorrow's dialysis patient.  We need to save ourselves and our future generations. We know how we got to these epidemic proportions - now we need to fix it.

Tracking industry news and trends, in advocacy, reimbursement, politics and the provision of dialysis

by Anna Bennett

I know that we are long overdue for a blog report - and the next one is destined to be a whopper, but I am not up to that right now and Bill is still in Chicago.  Good news on the update front: Bill's mother has had her surgery, it went well; I am settling in with a new unit; Peter is back from his travels; Mel is just heading into Australian Summer. By mid-October things at the Sharp End will be back to more frequent posts - Bill is participating in a DOPPS Task Force and will be going to the ASN conference in Philadelphia in November. ASN's annual Renal Week is the largest nephrology conference of the year. He'll have plenty to write about.

Last December when he created this blog, Bill really hit the nail on it's head by "Tracking industry news and trends, in advocacy, reimbursement, politics and the provision of dialysis".   I have to admit to being a little stats obsessed, and when Dr. Agar asked Bill about his site traffic, Bill turfed the question right to me.

Unfortunately we don't have access to overall cumulative data. There are three widgets/services tracking DFTSEOTN traffic - one is the visitor map in the middle of the right hand column and two are indicated by small icons (StatCounter and Site Meter) towards then end of the left hand column - all of these show the visits of the last 100 to 500 visitors.  The details of this group of recent visitors changes over time. We know visits to the site have gown over time but we don't have access to stats like which page is overall most popular or what source referred the most visitors overall.

However, we do know about the last 500 visitors courtesy of StatCounter. Let's start with a breakdown of where (on the web) people are coming from (in order of popularity):

• google.com  All hail the power of Google.  By far the biggest supplier of hits to DFTSEOTN
• No referring link  Coming in second is people who have either bookmarked, or cut & pasted the link into their browsers
• RenalWEB.com  Ahh RenalWEB, the goto supplier of industry headlines (and lately, we've been a few of those headlines)
• search.yahoo.com  Yahoo, another search engine sending people our way
• nephronline.com  Nephronline, with their new design, News, Features and Quote of The Day  - this is the website for the print Journal Nephrology News and Issues
• ihatedialysis.com The top CKD forum/support group on the web (consistently the leader in the Dialysis CKD Discussion Board Reports)
• kidneyspace.com  Another popular forum for discussion and support
• yelp.com  My review of my old dialysis center has created quite a few hits recently (I expect that this will drop off, as the dust settles from the closure)
• kidney.org.au It just goes to show that dialysis is international, and CKD knows no borders. It helps that we have a blogger from Oz, Mel.
• globaldialysis.com  Bill established himself as a travel writer (who happened to be on dialysis) on Global Dialysis

Now, with regard to the power of Google and all of the other search engines, here is a breakdown of keyword categories (in descending order of popularity):

• Medicare Bill has written extensively on how dialysis is paid for and current legislation affecting the Industry
• Dialysis a catchall category that covers dialysis in use - from cannulation to drain lines, people have a lot of questions.
• Industry what is the future of Dialysis?  What is new?  What happened to Aksys? Manufacturer and scientific news and reporting.
• Lifespan the most poignant search that we see: How long will I live on dialysis? 
• People posts about contributors to the industry
• News  Lufkin, Lifecare, Topeka, and any news story that affects us
• Travel yes, Dialyzors suffer from wanderlust too (I want to drive through wine country)
• Statistics people looking for numbers  (DFTSEOTN was once featured in a Brown University student Project on Medicare  - how's that for source material?)
• WEB looking for information, Bill's list of CKD links and Big List of CKD Blogs hopefully points people in the right direction.
• Advocacy being proactive in your future and your care also means being proactive in education and policy
• Medical Nephrology is a branch of medical science - we're together in this, Dr's and Dialyzors
• Misc.  DFTSEOTN has has some weird hits as well.  "i want 2008 contact email addresses of lawerys in australia" [sic] (what was that person really looking for?)
• Diet  trying to adapt to a CKD friendly diet is a chore for all of us 
• Transplant again, a lot of people looking for information on transplant
  

ESRD Renal Network

By Anna Bennett

I have a new unit.  In all of the turmoil of the past few weeks, it is touching that so many people have reached out to me.   I had a really nice phone call from an RN who works with IPRO ESRD Renal Network NY.  They were cc'd on all correspondence from and with the unit that would not support my home dialysis, and I really felt that I had someone watching out for my best interests.  If you are having a problem with your unit, you should contact your local network (available from the national home page).

There are people out there who are looking out for us.  Really, they are.  The ESRD Renal Network is:

The Forum of ESRD Networks is a not-for-profit organization that advocates on behalf of its membership and coordinates projects and activities of mutual interests to ESRD Networks. All 18 ESRD Networks are members of the Forum which facilitates the flow of information and advances a national quality agenda with CMS (the Centers for Medicare & Medicaid Services) and other renal organizations.

The mission of the Forum is to support the ESRD Networks in promoting and improving the quality of care to patients with renal disease, through education and the collection, analysis, and dissemination of data and information.

The National ESRD Network Forum has a great page of resources as well.

Redesign: NephrOnline by Nephrology News and Issues

by Anna Bennett

Nephronline has had a facelift.  It looks good, clean, and today's quote is from our own Dr. Peter Laird.  What's not to love about that?

Bill plugs his "Daily Read" on the lower left of this page, and between Nephronline and Renal Web, it makes it a bit easier to keep up on current news in the dialysphere.  Sharing information on such an immediate level make a difference in the industry.  Gone are the days of waiting for the monthly print version of a journal, or scouring multiple news sources for research.  Online renal news indexes, blogs, list serves and bulletin boards present timely, topical information. 

Congrats to Nephonline, their site looks good, is easier navigate and now includes blogs.

Here is what their Editor Mark E. Neumann has to say:

Welcome

Mark E. Neumann

In June, Nephrology News & Issues announced it had been acquired by Grand View Media Group, a publishing firm based in Birmingham, Ala. Grand View publishes both consumer and business-to-business publications, and NN&I is their first in the health care sector.

Much of what you see each month in NN&I and on the web pages of NephrOnline will continue; Grand View has made a commitment to keep our editorial team together. But we're taking the opportunity to review our editorial approach to delivering the news to you each day - and each month - and will be making some improvements, starting with this Web site.

Our re-design of the site offers our readers a more streamlined approach to getting at the important stories of the day. Our Top Story will reflect the most important news development for renal professionals; our Latest News links will offer other important news items. We are making plans to develop more blogs from people in both the renal industry and in the chair - the patient.

A new section called Features will offer commentary, viewpoints, and feature articles from the national newswire on public policy, politics, dialysis therapy, and technology. Finally, our new Resources section will offer the latest renal community news and an archive of important legislation and government documents that serve as reference tools for your use.

Of course, we will continue will our daily "Quote of the Day" and monthly ePoll, where we pose important questions relevant to renal practice. Likewise, don't forget our handy electronic Renal Resources and Buyer's Guide and Calendar of Events, covering all the important nephrology meetings throughout the year.

On the 10th of each month, we will also post the most current issue of Nephrology News & Issues. These issues will be archived on the site for your use.

Don't forget to sign up for our e-newsletter; we'll keep you informed each week on important stories that are taking place.

We hope you like the improvements to our Web site, and we encourage your comments. If you have questions about the site or want to write a blog, contact content manager Rebecca Zumoff at Rzumoff@nephronline.com.

Rebecca Zumoff
Content Manager
NephrOnline.com

Mark E. Neumann
Executive Editor
Nephrology News & Issues

                           

Saying goodbye to Renal Romance

Sadly, it was announced on IHD that RenalRomance.com is closing due to inactivity.

Renal Romance was part of Bill "Epoman" Halcomb's web empire.  While on disability from crippling CKD-5 (he had renal bone disease and was in a wheelchair) using his self-taught web savvy to try and support his young family and be a CKD advocate, he created the IHD family of sites.  Launched in March 2007 just under a year before his death, Renal Romance existed mainly as a message board for people to take a break from CKD and talk about relationships, love and romance. 

One of the biggest cheerleaders for the site was Susie "Goofynina" Trevino, she even strong armed me into posting one night, after a marathon phone call.   Susie was in love with being in love, and she wanted everyone to be as happy as she was in the romance department.  It was bittersweet when Susie passed away on Valentines Day this year, her loving husband and family by her side.

Renal Romance the website will be missed, it's closing is a sad coda to the losses of both Epoman and Susie.  It was a great effort to bring some brightness into our corner of the web.

CaringBridge.org: Keeping in touch when someone is ill

by Anna Bennett

Things suddenly change when a loved one is ill.  Here at the Sharp End, we have learned that first hand when Bill's mother had the stroke (hence all of my posts since Bill has been in Chicago). One thing that I have been thankful for is the CaringBridge Blog that Bill has been updating during his mom's recovery.

Rather than fielding countless phone calls, and sending countless e-mails, Bill can post an update and then be free to spend his time visiting his mother, taking care of the dogs and all of the day-to-day activities that seem to snowball when someone is suddenly ill (and when a Dialyzor suddenly packs up his machine and a month's worth of supplies and drives 2100 miles nonstop to get to the hospital).

Caringbridge is a way to keep people updated on how someone is doing.  It is great because the contact person only has to post one update that anyone (who has been invited) can read.  There is also a guest book feature, where people can leave messages which can then be easily printed.

Creating a Caringbridge site is easy and free.  Once it is set up, you can easily e-mail the link to anyone that you wish, and then they have instant access to the page, and any updates that are posted.  I highly recommend it.

Online home hemodialysis resources: NKUDIC versus Wikipedia

RenalWEB and NephrOnline link to the new National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) publication on Home Hemodialysis (RenalWEB also links to a NIDDK press release). This is official government information and is fairly complete but it is interesting to compare the NKUDIC resource with the Home Hemodialysis article on Wikipedia.

Wikipedia is a relevant comparison when you consider the two resource's relative Google rankings for the search term "Home Hemodialysis". As with many dialysis related searches Wikipedia is the number one link for "Home Hemodialysis" (Wikipedia is number two after Home Dialysis Central for "Home Dialysis"; the NKUDIC resource comes 5th or 6th).

Which is better?

I would say each resource has its strength but Wikipedia is stronger overall. Wikipedia includes pictures, NKUDIC has sketches (which are now in the public domain and can be used here and on Wikipedia) but the sketch of the NxStage is a bit off.  The NKUDIC NxStage sketch suggests bags of dialysate but it does not accurately depicting the System One being used with bags or with the PureFlow, NxStage's dialysate production device. The photos are of an actual NxStage set up (full disclosure I posted the photos and I  have edited the Home Hemodialysis Wikipedia article).

Another thing in favor of Wikipedia is that it includes footnotes to peer reviewed data. While the NKUDIC is I am sure thoroughly resourced they do not directly link or acknowledge the resources they used pulling their information together. The NKUDIC does give background that Wikipedia includes in separate (though linked to) articles. There are two other content differences.

Wikipedia includes under Home Hemodialysis advantages:

Live longer, according to a case-cohort study.^[10]

[10] being Saner E, Nitsch D, Descoeudres C, Frey FJ, Uehlinger DE (2005). "Outcome of home haemodialysis patients: a case-cohort study". Nephrol. Dial. Transplant. 20 (3): 604–10. doi:10.1093/ndt/gfh674. PMID 15665030. Wikipedia can direct readers to new information and information that is informative but not conclusive. And finally the NKUDIC is not quite right when it comes to discussing Home Hemodialysis schedules.

Home Hemodialysis Schedules

Wikipedia does a nice job presenting various schedules and the differences among them. The NKUDIC article does not even reference doing a conventional schedule (3x week for 4 to 5 hours on a conventional machine) at home other than in regard to nocturnal. One area where both articles come up short is in describing Home Hemodialysis funding. NKUDIC seems to let providers off the hook when they write:

Clinics may limit daily HD to those who have employer group health plans because payment from Medicare alone would not cover their costs.

This must be in reference to unreimbursed training costs which Wikipedia addresses by writing:

that dialysis centers only stand to benefit financially from long term home hemodialysis patients, as the other benefits, as currently structured, are externalized to society.

This is really only demonstratively true for the NxStage which uses a lease business model (or more frequent dialysis on a standard machine). If the machine used at home is a standard machine or used machine that is fully depreciated the finances change. Someone who is dialyzing every other night at home on a previously used incenter machine should be making money for the unit from the start since each of their training session would have been reimbursed by Medicare as would each of their home treatments.

Wikipedia will never replace authoritative publications from federal agencies but with each new edit Wikipedia becomes a better more complete resource and more and more Wikipedia is becoming the first stop when someone needs to understand a new topic. Which is better? I'd say it is nice to have both but  I like Wikipedia because unlike the NKUDIC resource, I  can edit and improve the Wikipedia resource.

Teaching Dialysis at Business School (using IHD)

By Anna Bennett

After an earlier discussion with Bill, I started thinking about for-profit dialysis.  Specifically, I was wondering if there had been any business school case studies done on the for-profit business of dialysis. In my experience, case studies often shed an interesting light on the particular business/industry that they are profiling.  After all they are often written by the MBA student's who will be tomorrow's CEO's.

I came across a few studies.  One that caught my attention was:  Challenges in Renal Care (offered for sale by Harvard Business School Press)

This is how Stanford's Graduate School of Business describes the authorship of  Challenges in Renal Care:

Elizabeth Rodriguez prepared this case under the supervision of Professor Stefanos Zenios as the basis for class discussion rather than to illustrate either effective or ineffective handling of an administrative situation. This case was updated in 2006 by Melanie Wyld.

Well, it is safe to say that I am intimately familiar with the process of dialysis, and as I started reading the case, I was a bit bored. But then, I started looking at the footnotes, the patients that they were quoting were eerily familiar:

6 Katherine, 43-year-old dialysis patient http://ihatedialysis.com/forum/index.php?topic=173.0 (June 23, 2006)
7 http://ihatedialysis.com/forum/index.php?topic=466.0 (May 2, 2006).

Does KitKatz, (a moderator over at IHD) know that she is quoted in a teaching case used at Stanford Business School? (As a working teacher herself, I hope that she is thrilled to be quoted in an academic text.)

And one particularly poignant quote was attributed to:

10 Stacy, 34-year-old dialysis patient, http://stacywithoutane.blogspot.com/2005/02/dialysis-is-stealing-my-soul.html (June 23, 2006).

Why that is IHD's StacywithoutanE - Bill tracks his blog (as well as over 60 others). Stacy has always been very candid with his dialysis experience, his blog is touching with the right amount of wit and irony thrown in.  Even though he makes his living in the public spotlight as a Drive Time DJ on the FM dial, he has subtly integrated his private CKD journey/battle with his public persona.

This is a sure sign that internet blogs and bulletin boards are becoming a facet of mainstream education.  Dialyzors' voices are being heard (or at least their words are being read)- in lieu of actually going to a dialysis unit to interview patients, the researchers searched the net, and stumbled across IHD.  At first, my reaction was that the researchers were being lazy, but then I realized that, via the internet, they have access to candid thoughts of individual Dialyzors.  This is a good thing.

Two of my favorite things

www.nocturnaldialysis.org and www.kidneyschool.org are two great web resources. Kidney School is from MEI, the non-profit friend to dialyzors that inaddition to Kidney School runs Home Dialysis Central and Life Options. Nocturnal Dialysis says it's by the Barwon Health Renal Unit which is located at Geelong Hospital in Victoria, Australia; I think it's mostly the work of the good Dr. Agar.

Both sites embrace the idea that knowledge is power. Kidney School gives an overview of the whole kidney disease experience and while it is based on science it is informed by MEI's Executive Director Dori Schatell's long term interaction with the online CKD community - through the Dialysis-Support listserv, the home dialysis forums, and the life options/living with kidney disease message boards. MEI is a nonprofit (donations accepted) with a staff and tech support - Kidney School uses modules (no doubt based on a study of how people learn) and is broken into small, bite sized pieces. Nocturnaldialysis.org not so much.

With nocturnaldialysis.org I think of each link as a PowerPoint essay. The site backs up my claim that many more people should be dialyzing more frequently and longer and that there is a lot to recommend about a flexible schedule given the goal to get as much dialysis as a life allows.  Funding NHHD – How we went about it goes through the numbers for the nocturnal program at Geelong. It's a totally different reimbursement model but the rationale is directly applicable to the US system ... but that is (and will be) another post.

I should say that I've met both Dori and John - the people behind these two sites, wonderful people. Both are data driven to the same conclusions and both are willing to share their conclusions. I think they are part of a growing group of advocates that are frustrated with the planetary hegemony of conventional kidney dialysis (which is PHOCK'D)  ... but that's another post too. If you haven't been there check out both sites. Together they can take a person from getting a fistula placed to dialyzing at home while asleep, from darkness to light.

NEJM lets you play doctor

The New England Journal of Medicine has a recurring feature, Clinical Decisions:

This interactive feature allows readers to decide on the diagnosis or management of a clinical case. A case vignette is followed by specific clinical options, none of which can be considered either correct or incorrect. Readers can participate in forming community opinion by choosing one of the options and, if they like, providing their reasons.

The current case involves "a 55-year-old woman with type 2 diabetes, obesity, and hypertension has been under your care for the past 2 years". You are the doctor. What will you do?  You have three options.

Dialysis poem

Derrick J Kess has a poem from the sharp end of the needle up at poetry.com:

Live life big

KidneyTalk

The week of January 9 episode of KidneyTalk is from San Fransisco and the American Nephrology Nurses Association (ANNA) conference. The guest is a nephrology nurse:

Mary Houglum is the type of nurse that every dialysis patient would love to have. Her compassion and desire to be a nurse came from a night nurse she had in the hospital when she was 8 years old. This program will let you hear how she takes the time to listen to her patients to answer questions, resolve issues and explain treatments. Mary tells Lori and Stephen that it is important for the patient to be open and honest with their nurses.

Mary does sound like a nurse you would want at your unit. Stephen is a tough crowd, accepting denial in himself but not others, but it's hard to know when he is being serious or trying for a joke. Advertisements this week include one for fistulas, secondary parahyperthyroidism and NxStage.

This week in healthcare policy

At Health Care Policy and Marketplace Review there is a post up reviewing about 20 healthcare policy blogs. This Health Wonk Review:

is a biweekly compendium of the best of the health policy blogs. More than two dozen health policy, infrastructure, insurance, technology, and managed care bloggers participate by contributing their best recent blog postings to a roving digest, with each issue hosted at a different participant's blog.

these lists are an easy way to track blogosphere discussion of healthcare policy.

Dialysis poem

GotPoetry.com has a new poem posted:

Dialysis

by randy-johnson

(This is a fictional poem)

I have to come here continuously to be on dialysis.
My kidneys are no longer good and I really hate this.
Several of my relatives could've donated a kidney but they all said no.
I've always been good to them and when they refused, it was pretty low.
When my brother had an accident last year, I donated blood.
I even bought him his first car and he treated me like mud.
After three and a half decades, I finally see these relatives for what they are.
Being related to such losers really hurts and it has given me emotional scars.
Maybe I'll get a kidney even though things look pretty grim.
But when it comes to my relatives, I will never forgive them.

It is labeled as being fictional but spend any time on the dialysis discussion boards and this sentiment is all too common.

National Kidney Federation

National Kidney Federation film from 2005 (10 minute run time, need Quicktime) presents the British advocacy group, for and by, those at the sharp end of the needle. This group seems to work closely with their Parliament. I would like to know more about their advocacy. What are they working on?

Their website seems to post their correspondence but I couldn't find much on modality advocacy or resource advocacy. I would think with a single payer system there would be robust in the trenches advocacy. There seems to be a bit for additional units but where is the advocacy for additional units?

Do they challenge the three day a week convention? The film says NKF has two roles: campaigning for improvements to renal provision and treatment; national patient support services. That would about cover it.

Remembering Dale Ester - Pioneer in the Dialysphere

Dale Ester was a pioneer in the dialysphere - the online ckd community. In 1995 Dale and two others (Peter Lundeen and one other whose name is lost to history) started a listserv on the Washington University servers in St. Louis. A listserv is an automated email distribution system - when an email is sent to the listsev address it is automatically sent on to every member of the list.

Few people I know were using the internet in 1995 but by the fall Dale's Dialysis_Support list had 40+ members across the globe. I joined the list in 1996 when there were about 200 or so members. I remember those early years of the list as a volatile mix of information and passion. The internet was new to everyone back then and we had to learn how to communicate through the written word. At times it was contentious but everyone who participated knew in their bones that this would be an important tool of support from now on.

When I think of those early years I remember some very heated discussions - there was one member who loved a good give and take - a body builder from Arizona who was living out Johny Cash's song catalog. There were plenty of people who were angry and used the list to vent. There was a epic series of posts by Ron Bull. Ron ate a variety of fruits and posted with each taste. This was in response to people's posts about their zero tolerance approach towards fruits: they made it sound like one banana would kill you instantly. He survived his fruit binge. Over time people learned how to have an online discussion and when Dale moved the group to Yahoo in 1999 he instituted rules that limited the kerfuffles.

Mark over at NN&I wrote a nice piece in memoriam of Dale

Dale was the Ann Landers of patient advocacy, helping those who didn’t understand kidney disease and how to cope with the stress it placed on self and family. The listserv helped him reach out to many who he never met, but helped to steer them through the emotional upheaval of a chronic illness.

Mark writes that I was a moderator at D_S ... if only that were true. Dale was the only moderator and to date we have not been able to figure out how to access the Dialysis_Support account. At this point only a handful of the 1,200+ members can post to the list, everyone else's messages are waiting for a moderator's (Dale's) approval before they can be posted. As well no one can join the group because that too requires moderator approval.

Yahoo under no circumstances reveals a person's password. I did a little googling and found numerous stories of orphaned groups. There is still hope that after the holidays a member of Dale's family or a family friend (NN&I is based in the area) can access the Dialysis_Support account by using Dale's computer. Fingers crossed.

It was hard not having the Dialysis_Support list up and running over the holidays. There was a discussion board set up at the Life Options site "Dialysis_Support Listserv Discussion" but after an initial few posts the board has gone quiet. Normally I would expect 80 to 100 posts a week. I'll have to think a bit to come up with what to make of the situation.

KidneyTalk

Each week Stephen Furst and Lori Hartwell release a new KidneyTransplant podcast. I've been a guest twice (here and here) Stephen and Lori keep the witty banter while each week interviewing someone from the dialysis community.

Dialysis is such a large and complicated subject that no two points of view are the same each week; listening to KidneyTalk lets me see the beast through other eyes. One week the guest can be a dialysis industry CEO, the next week a long term patient. The interviews segments are separated by brief commercials - often humorous faux ads for 'products" like protein.

This week the guest is Jessica Fryse who at 19 works and goes to school after 18 years with stage 5 CKD.