Dialysis from the sharp end of the needle

H1N1 concern v. skepticism

By Bill Peckham

I just listened to RSN's new H1N1 KidneyTalk with Lana Kacherova, RN, Quality Improvement Director for the Southern California Renal Disease Council. Stephen takes the skeptics point of view expecting this will be another crises that doesn't amount to much - mentioning Y2K and the H5N1 "Bird Flu" virus. This is a pretty common view, and often this point will be made along with the point that seasonal flu kills tens of thousands of people every year, yet H1N1 has caused one confirmed death in the US. Therefor, how can H1N1 be a bigger problem than seasonal flu? (which is no big deal). I'd tell Stephen that I am worried, this is a bad situation particularly for those on incenter hemodialysis.

Flu is always a problem and we put a lot of effort into minimizing its impact each year through community vaccination programs that target at risk groups - such as people with chronic kidney disease. This flu has an almost wide open population to infect (there has been a report that people over 60 may have some natural immunity (probably from being infected during the 1957 H1N1 1918  echo pandemic) which would be great news for our dialysis population) and that is what defines a pandemic - a communicable disease, normally a flu virus (SARS, hepatitis are nonflu examples) which is spreading from human to human, across the globe. It's clear this is happening, that makes the H1N1 virus a pandemic virus.

I think we should expect that WHO will announce a stage 6 pandemic soon, the virus is sustaining human to human transmission - which means on average each person the virus infects goes on to infect more than one other person. That in itself does not create an health crises, the unanswered question is severity. Does the virus cause severe illness? Which is really a three or four part question: how many people will get sick? (Over what period of time?) What percent of those who get sick will need hospitalization? And of those, what percent will die? If, as we all hope, the virus does not cause serious illness then we can thank providence for this wake up call but at this point there is no way to know that that is how this will turn out.

We still don't know what this virus will look like in people who have not traveled to Mexico or been hanging around people who have traveled to Mexico. People with a Mexico connection - the first cases - have been treated with Tamiflu; over the next weeks we'll find out what course the disease takes in people who are blindsided by this and who do not get Tamiflu within 48 hours of symptoms. It is very good that this virus responds to Tamiflu but that will create its own problems around matching supplies with demand if the H1N1 virus turns out to be more severe than our hopes.

It is generally assumed that this flu will take the summer off, most flues go into a lull this time of year, but that does not have to happen. The influenza virus is extremely unpredictable. It is prone to mutation, it could get better or it could get worse. It could go away. It could stay and build into the summer. Or it could go and then come back. We just don't know. We have three modern examples of pandemic flu: 1918; 1957; 1968. How well could you predict a hurricane or an earthquake if you only had three examples? The three pandemics from the last century are three points on a continuum, there are more severe pandemics than 1918 possible, just as there are pandemics possible that are milder than 1968. We don't yet know where 2009 will end up on that continuum but it will be there, this is an historic event.

I would tell Stephen that it is too early to call this one and that the provision of dialysis is still threatened. As I have written few providers took preparation seriously. The Northwest Kidney Centers has posted their Pandemic Guidance for NKC patients and NKC staff; NKC intends to continue providing dialysis to their patients in the normal time and place - they have N95 masks, Tamiflu and pandemic policies and procedures in the units and ready to go. NKC is one of the few dialysis providers to have an established, close working relationship with their local emergency planning agency. NKC has thought about what they will do in a pandemic, which is more than most providers can say.

Right now is a hell of a time for dialysis providers to be making first contact with their local emergency planning entity. Dialysis providers have failed if their plan is to not dialyze their patients with flu like symptoms. They have failed as dialysis providers if their plan is to send patients with flu like symptoms to the local ER. If this turns out to be the least bit severe then I think the risk of failure is high and that is what is keeping me up at night.

Dialysis & CKD Blog Report 4/30

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 4/27. You will note that more references to the swine flu are appearing both from advice for avoiding flu exposure and persons who have it.  So be careful out there, and be prepared.   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 the importance of N95 masks for dialysis patients in this  time of pandemic flu concern (Very important information for those getting treatment in-center.); Northwest Kidney Centers offers in-center patients a trial run of more frequent dialysis. (NKC again puts its patients' health needs and interests first.  If only the rest  of the industry would!)
• Kamal Shah's Blog Kamal waxes poetic over his favorite Indian breakfast treat, the sublime idli  (I've never tried one but I sure do want to now!); and muses about the difficulty of finding a good computer systems analyst.
• Kaply, Inc. has a small fever but hates being fussed over; and has a dialogue with a fathead who hopes swine flu will help him lose weight.(I think Jenny Craig would be a better idea.)
• Toastiest is having trouble finding a primary care doc, nobody is accepting new patients. (I have had that problem, too. I think it's everywhere.  Specialists make more money so there are fewer and fewer primary care physicians coming out of the med schools.)
• Stayin' alive is struggling with high phosphorus even though she has changed her diet drastically and the medication prescribed is way too expensive. (Some companies have assistance programs available if you can't afford their meds, maybe that company does.)
• Becky Perry gets an extension line that gives her more mobility when she does her PD treatment; and feels low energy and depressed -- maybe she needs more iron.
• The Adventures of Stacy Without An E Stacy's newly installed  fistula has a hematoma - he calls it his fistuloma - and is frustrated by arrogant, dismissive doctors.(I hate doctors like that,  They bring out my rage.)
•  Jack's Kidney Adventure Jack returns to work and readies the office and personnel for the presence of an immunosuppressed person.(Some good ideas here for transplant recipients returning to the working world.)
• Let us Consider One Another thanks for your prayers.
• On the Road to a Cure has announcements of upcoming Lupus walks events.
• Really, I'm as Old as I Feel? Had a wonderful weekend with her daughter visiting an aquarium. (I love the dolphins, too.  They add "porpoise" to life!)
• I Am. Are you? shares a poignant letter from a young kidney recipient.
• Transplant Alliance steps to preventing the flu.
• Dialysis Postings writes about the dialysis patient's need for love and emotional support.
• Dialyse This anticipates a long, annoying and painful lab appointment; and it is all that; has the swine flu along with a black and blue arm. She thinks one of the docs in her unit looks and acts like Hawkeye from "Mash".
• Bud's Ramblings He gets a gift of bound blog pages and is to see infectious disease doc; needs to get a PICC line and 10 days of IV antibiotics.
• Disability Prejudice And Civil Rights Watch has a link to an action report on the "Community Choice Act."
• Precious Bodily Fluids Ultrasound classification of renal cysts.
• Renal Fellow Network posts on How to do the water deprivation test - useful in the workup of patients with polyuria under certain situations; Lithium induced hyperparathyroidism; and combined kidney/bone marrow transplants (These can allow a transplant recipient to go without immunosupressive drugs.)
• Uremic Frost has a brief review of kidney stones; and a shocking story about a woman who faked kidney disease to get money. (Shame on her.)
• Renal tsar's blog writes about his visit to the Liverpool Hospital's dialysis unit and is pleased to ses a rise in AV fistula use and a fall in the MRSA rate, also they established a database of units worldwide that will take UK patients who are going abroad for holiday or business; reports on new quality initiatives with fun name acronyms, includes a link to a slide show, High Quality Care for All, that aims to ensure that quality is the organizing principle for kidney care
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) was invited to speak at a book fair; and is going to partner with a German psychologist who understands dialysis issues to add his perspective to the blog.
  
• Neophron's Senescence had a wonderful Bangkok vacation and shares some video footage.
•  pkdmom2five Happy Sweet Sixteen to a friend.
• Lemonade and Kidneys is moved to start a fundraising campaign for an unfortunate woman.(Make sure she's not faking like the woman mentioned in Uremic Frost's blog above.)
• Chronicals of the PD Warrior recommends a fellow blogger whose writing she enjoys and provides links.
• As The Pump Turns Kim hung out in Chicago with two great people she met through Blog Talk Radio ( Annie and Burl Live!) and also got to meet the cool  Doctor Anonymous (Blog Talk Radio luminary); and gives a public service anouncement about how to avoid the flu.
• My Chronic Kidney Disease finds his motivation to live: his six year old daughter tells him she wants him to live a long time. (One of the best reasons I've heard to hang in there.)
• Encompass Network Partners Diabetics shouldn't wear flipflops, not enough foot protection.
• Kidney Community Emergency Response has swine flu updates and tips for avoiding the flu; postponing their meeting in light of flu developments; important links and guides for developing an emergency plan in this flu situation.(KCER is the place to check for most relevant flu news for the renal community.)
  
• Renal BizBlog reports that a California dialysis unit has the first suspected patient with swine flu and suggests people check with KCER (see above site) for updates regarding the renal situation and the flu.
• Team Teddy Bear after a long absence has decided to try to write again (Welcome back!  We'll be checking in on you, so keep writing.)
• The Renal Unit current renal tweets, news, and blogs
• The Life of a 20-Something With Lupus Miz Flow encounters an emergency situation on the subway that brings up issues of crisis management, faith, swine flu, and reflections on how hard it must be for her parents when she has been in pain. (Wow, Flow, what a scary story!  It was nteresting to note all the different responses people had to a person in distress.)

Northwest Kidney Centers offers all incenter patients opportunity to try frequent dialysis

By Bill Peckham

The Northwest Kidney Centers May/June patient newsletter, Output, has an article announcing a new program that allows people to "test drive" more frequent dialysis:

What is the main benefit of dialyzing five days a week? You will feel much better. That's why the Home Hemodialysis department at Northwest Kidney Centers would like to give you a chance to take home hemodialysis for a "test drive." Starting in May in NKC's Eastside centers, daily hemodialysis is available on a trial bases, with no strings attached.

I hope this is very successful. It's a challenge to get people already incenter to consider going home, and dialyzing more frequently. The hope is that after two weeks of frequent dialysis along with first hand experience with the equipment they will be better informed to evaluate the home hemodialysis option.

If all dialyzors were fully and accurately informed about their dialysis options how many would choose to dialyze at home frequently? It's an open question but I do think being fully informed does include first hand experience with how it feels to be frequently dialyzed. With out that first hand experience I don't know how you could be fully informed to make the comparison to a conventional incenter dose.

Dialysis patients need to understand mask guidelines

By Bill Peckham

Last May the U.S. Department of Labor Occupational Safety & Health Administration (OSHA) released a proposed pandemic mask use and stockpiling guidance, CIDRAP had a good summary. This was used in dialysis pandemic planning circles to formulate plans that are now going into effect. The Kidney Community Emergency Response (KCER) Coalition Pandemic Preparedness Team's website links to the Summary of OSHA Respirator Requirements (PDF link). The OSHA endorsed KCER recommendation is for the patients to use surgical masks (OSHA calls these facemasks) and for staff to use disposable N-95 masks (OSHA calls these respirators).

Surgical masks do not offer the wearer reduce exposure to small inhalable particles, that's not their job. A surgical mask's job is to protect others, somewhat, from the wearer. The reason OSHA would like patients to wear surgical masks is to give staff an added layer of protection. It's not that the surgical masks will protect the patients from getting sick, it's that masked patients offer staff some level of protection from a communicable patient.

People on dialysis will be making their own calculation of risk as information comes in. Right now the news is only worrying if you think it represents the leading edge of a wave. If it does turn into an influenza wave then patients, in order to feel comfortable attending dialysis, will want some personal protective equipment - surgical masks don't do the job. The guidelines did not have the special circumstance of incenter dialysis in mind when they made their workforce-centric recommendations.

Patient use of N95 masks would increase patient safety and worker safety. Patients with the ability to purchase N95 masks should be told that it would be a good idea. Eventually people are going to learn that surgical masks don't offer protection, telling them now while Amazon.com has N95 masks in stock (as well as the more economically efficient and comfortable to wear reusable masks) is the right thing to do.

People on dialysis will be making their own calculation of risk as information comes in. Right now the news is only worrying if you think it represents the leading edge of a wave. If it does turn into an influenza wave then patients, in order to feel comfortable attending dialysis, will want some personal protective equipment - surgical masks don't do the job. The guidelines did not have the special circumstance of incenter dialysis in mind when they made their workforce-centric recommendations.

Patient use of N95 masks would increase patient safety and worker safety. Patients with the ability to purchase N95 masks should be told that it would be a good idea. Eventually people are going to learn that surgical masks don't offer protection, telling them now while Amazon.com has N95 masks in stock (as well as the more economically efficient and comfortable to wear reusable masks) is the right thing to do.

Dialysis & CKD Blog Report 4/27

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 4/24. If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are mine.

• Dialysis from the sharp end of the needle Bill worries about pandemic preparedness (Read his posts under "pandemic" for important issues); blog report update.
• Kamal Shah's Blog Kamal determines that his fistula pain was definitely related to movement during sleep and consults with fistula expert, Dr. John Agar, regarding needle placement  direction and Debbie Brouwer regarding other fistula issues.  (John Agar has done webinars for Home Dialysis Central and he is terrific!)
• Drinking my way through Trader Joe's Wine makes Chorizo, Kale and Cannelini Sandwiches on fresh french bread. Paired with the Bear's Lair (a wine), and for dessert homemade grape sorbet (Are we hungry yet?  I sure am!)
• Toastiest remembers Bea Arthur and "The Golden Girls" fondly and includes some video clips from the show (She was a fabulous actress and we will miss her.  I loved  "Maude", too); also has a weird video of the opening credits from "Different Strokes" with an alternate soundtrack that changes the whole nature of the show. 
• Stayin' alive discusses issues she has about her prosthetic, the death of one dialysis friend and  the return of another, and plans for the book she is writing. (Condolence on the loss of your friend.  We have all been through that.)
• Hasten down the wire comments on the ridiculousness of Wall Street's version of merit pay.  (I'd like some of those salaries, too!)
• The Life of a 20-Something With Lupus went to a food festival and watched a woman assault Mr. Peanut (I guess she wanted to "snack" him around a little.)
• Nitey Nite- a nocturnal dialysis blog is wearing sexy jammies to her nocturnal dialysis sessions; her nifty new dialysis chair arrives, she likes it and names it "Hot Seat Harry."
• Becky Perry  celebrated her 43rd birthday (Happy B'day, Becky, we wish you many, many more!); and shares a video of her PD cycler and room set up.
• CHRONIC POSITIVITY - Life with Polycystic Kidney Disease  his sister gets called that a kidney is available but someone else gets it. (Here's hoping she gets the next one.)
•  On the Road to a Cure shares a link to a new blog called Looney Lupie Lady who hopes to share lupus information with others.
• Really, I'm as Old as I Feel? had a wonderful trip to Wyoming.
• I Am. Are you? updates on Illinois organ donor awareness events
• Transplant Alliance a new group has formed for transplant and kidney disease awareness in Canada; and a 25 year old kidney recipient introduces herself.
• Dialysis Postings a blogger from the Phillipines writes about how poverty is one of the causes of death in dialysis patients;and information on CKD and vascular disease
• Chronic Chick Talk a music Monday video from R.E.M.
• Dialyse This is disturbed by the death of someone in her dialysis unit and wonders how many deaths a fellow patient, who has been there for 15 years, has seen.
• Bud's Ramblings a forum reunion and more gardening.
• Disability Prejudice And Civil Rights Watch  decries a Florida law that allows  privatization of care of people whom the state has deemed vulnerable due to disability; and a very interesting settlement of a class action lawsuit that rebate consumers for overpayments they made.  Links are included to the drug list and contact information.  (I found a number of mine on it so I'm going to file a claim.  Check it out!)
• Renal Fellow Network A few basics about the prostaglandins, a major player in renal hemodynamics; and links to quality articles on electrolytes.
• Uremic Frost Items on growing tissue for grafts from human cells; a video report on diet sodas preventing kidney stones; a study that reveals that drinking 8 ounces of pomegranate juice a day may help to prevent the spread of localized prostate cancer;  and a study showing that men who use statins may be at lower risk for prostate cancer.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) mourns the death of fellow dialysis patient, Oscar Tucci.
  
• El Blog del programa “R - Hacelo por mí” (en Español) The Blog of "R - Hacelo for me" (Google translated from Spanish) reports on the swine flu.
• Free range fish sticks Shiela takes  off too much fluid and ends up in the ER (Got to be careful when you weigh in.)
• pkdmom2five has a graduation celebration for her oldest child (Congratulations!)
• Lemonade and Kidneys tells us all the correct pronunciation of "jewelry" (Just in case you didn't know.  Now how do you pronounce "nuclear?")
• My Chronic Kidney Disease recipes for guacamole and carrot/pineapple juice; cures in wild animals; recognizes the importance of living joyfully in the moment as he watches some children play; after two months since CKD diagnosis he is still not feeling well despite attempts at alternative medicine.
•  Encompass Network Partners visual clues for PAD (peripheral artery disease) to help avoid amputation.
• Kidney Diet Tips blueberries are the perfect fruit for those on renal diets. (I love 'em!
• The Renal Unit renal tweets, news, and blogs

Flu of the Americas

By Bill Peckham

This makes sense "Swine flu" name is wrong -world animal health body. On the one hand what you call it won't change its course but the swine designation seems to confuse more than clarify. At some point the narrative will settle on a moniker, until then I'm going with Flu of the Americas.

CDC says to prepare for more bad news

By Bill Peckham

RenalWEB is tracking the latest news reports concerning the spread of a novel influenza virus. We've been told to expect bad news, more reports of cases and that we should expect deaths. From the CDC's Sunday news conference transcript:

[Elizabeth Cohen, CNN ] Is it just that our denominator isn't that big yet, we just don't have many cases and that's why we're not seeing deaths yet?

[Dr. Anne Shuchat, CDC] That's one possibility. Of course, we may be fortunate and not have them, but I think we really need to prepare for the idea that we will have additional cases, additional affected states and I do fear that we will have deaths here.

Much depends on the severity of this virus - how easily it passes among people and how sick it makes someone who catches it. If at the end of this week we have reason to believe that the virus passes easily among people and often causes illness that requires hospitalization, then dialysis units will need to be prepared with policies that maintain the provision of dialysis.

Dialysis units should have and should be able to communicate pandemic policies to their staff and patients. Dialysis units should be able to answer questions such as:

• If member of staff/patient household has flu what should be done?
• If staff/patient presents with symptoms what should be done?
• If staff/patient is confirmed as having the novel flu what should be done?

I'm not sure what the right answers are, but these policies should not be established in the moment, they need to be thought through and established before they are needed. I hope units have established policies because they may need them sooner rather than later.

It will be important to maintain good communication and trust throughout what could be a long period of challenge; patients need to know what to expect from their units.