Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 6/12

By Miriam Lippel Blum

 Here are the CKD related blogs updated since my update on 6/9.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

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

Professor John Agar receives the Medal of the Order of Australia

 By Bill Peckham

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

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

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

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

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

By Bill Peckham

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dialysis units should follow emergency planning best practices:

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

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

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

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

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

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

By Bill Peckham

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

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

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

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

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

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

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

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

Dialysis & CKD Blog Report 6/9

By Miriam Lippel Blum

 Here are the CKD related blogs updated since my update on 6/6.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Peter starts his NxStage training, has issues with air bubbles and a plastic taste; Bill explains his medical situation (We are all rooting for you, Bill.) 
• Kamal Shah's Blog Kamal likes Jay Leno and talks about an Indian equivalent.
• Kaply, Inc. has her first trip to Trader Joe's and buys crackers and cheese;  her friends help her out and she buys an ice bag.
• Toastiest wonders why the man who killed the abortion doctor isn't treated like a terrorist.
• Stayin' alive writes about a wonderful group of knitters who have eased her isolation and replaced her yarn lost in a flood.
• Becky Perry reviews Sister Chicks in Wooden Shoes; has a new look to her blog (Very nice photo, Becky) and reviews a Christian romance novel, A Passion Denied.
• On the Road to a Cure Lupus Now! magazine wants to know your favorite autumn and winter family traditions, link provided.
• Really, I'm as Old as I Feel? updates on almost 2 yr. old Abby's skills (Really cute!)
• I Am. Are you? provides a comprehensive list of links to official Donate Life affiliated organizations that have a presence on the social media platforms.
• Life on Dialysis Mumbai's summer heat causes problems with fluid levels and blood pressure, he awaits the cooling monsoons. 
• Chronic Chick Talk writes about finding peace with chronic illness; finds a perfect Father's Day gift.
• Bud's Ramblings is looking forward to some visitors.
• Disability Prejudice And Civil Rights Watch has music video Keep Breathing by Ingrid Michaelson; links to stories about: a mental health advocate fighting for the right to hospice care denied by her insurance, the Alaska Supreme Court grants mental patients Constitutional Rights, and a demonstration protesting the death of a woman who was neglected at a hospital;  a lovely tribute to his  Dad's 82nd birthday which includes a  video of a Woody Guthrie song; a music recording of Pete Seeger singing "Gedanken Sind Frei."
• Precious Bodily Fluids links to a demo of an online database he likes called Dabble DB;
• Renal Fellow Network a study shows no difference in depression and QoL measures between CKD4 and CKD5, all were traditional 3x/week hemo patients, Simon wonders whether DSEN readers would want to know about comparing home hemo dialyzors with the other groups. (You're darn right we would!); another study shows that diagnostic information from renal biopsies on people over the age of 80 had potential to modify therapy in 67% of the cases, particularly those with acute kidney injury or nephrotic syndrome; a recent study suggests that a combination of aspirin and dipyridamole can improve access patency rates by a modest but significant amount.
• Uremic Frost a sleep study shows a link between lack of sleep and hypertension.
• Renal tsar's blog a patient survey shows the importance of transport to people receiving regular hemodialysis; a link to a discussion regarding what steps the government is taking to encourage f self-care and home dialysis; a link to a truly excellent speech given by CKD patient, Jonathan Hope, on end of life care. (One of the best presentations I have heard on the subject.)
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish) while out of town on business, Alejandro is called about a potential transplant, and has a heck of a day.
  
• pkdmom2five has a cute photo of toddler fishing; her biopsy results were normal.
• Lemonade and Kidneys has photos of yummy things she made over the weekend (I have to take more insulin just looking at them!); announces the winner of the toy giveaway.
• Phoenix27 Summer is over in Singapore and is trying to make sense of his life.
• Mushroom's Blog posts a fine photo of him taken by his nephew Jonathan.
• I need a kidney The days before each clinic visit are fraught with anxiety as Jason's transplant deteriorates; writes about his first donor and the evaluation process.
• DailyHemo - Home Dialysis Advocates New Video: Mr. McDowell Demos His Home Dialysis Machine. (It's the NxStage System One.)
• Renal BizBlog reports that a legislative committee rejected cutting dialysis for Medi-Cal patients in California. (The vote takes place tomorrow or the next day.  Let us hope and pray that they don't end the lives of 80 people on dialysis to balance the budget.)
  
• The Renal Unit Latest renal tweets, news, and blogs.

NxStage: My Initial Experience - The Good, The Bad, The Ugly

By Peter Laird, MD

After an exceedingly long wait, I have now completed my first week of home dialysis training on the NxStage machine. My conclusion after this week, is that I have proven with my own experiment that daily dialysis is FANTASTIC and I never want to go back to to usual incenter hemodialysis no matter how well done. However, there are several issues that I have either observed or experienced in my first week which I will relate as the Good, the Bad and the Ugly.

First, the Good. As I began above, the differences of cognition and general well being can never be achieved with usual care in center that I have experienced with 5 days of continuous HD therapy. I ate my first orange, my first orange juice, my first banana and my first sliced tomato in over 3 years. Wow, I have been deprived is all I can say.

I must make a special note of how fantastic my trainer at Kaiser Sunset is. Her name is Rita and she makes me almost, but not quite forget that it took nearly nine months from the time of my request for NxStage until I started my home training. My wife and I felt a kindred spirit with her immediately, and she is the first dialysis person to give me a hug and peck on my cheek at the end of my first week of training. She is a breath of fresh air after over two years of some very unpleasant experiences at the hands of dialysis staff and I look forward to learning as much as I can from this kind lady.

There is much more that I will state over time on the "Good" of home dialysis, but for now let me turn to my criticisms. The Bad:

1. (NxStage) No air chamber in the system. It is impossible to get all of the micro-bubbles out of the system before the first pass is giving to me. I went through the snapping step very carefully 3 times and still after sitting for a few minutes, several grew back onto the tubing again. My question is what effect does this have on accumulated pulmonary function tests over years of use. Patients on the cardio-bypass machine have significant cognitive declines after Coronary Artery Bypass Grafting (CABG) from this simple issue of micro-bubbles going to the brain. I am left with an open question of what will the long term effect of micro-bubbles be on my pulmonary system? Why not eliminate this issue with air chambers that will reduce this issue during the priming stage.


2. (Kaiser) My long wait. It appears that some of the problem is in the referral practices where many patients are referred before they have a mature access or have any experience with self cannulation. This leads to training times of over 2 months in some cases. I believe that an upfront self cannulation and access maturation in the referring unit will improve the training times dramatically. With the integrated health care system of Kaiser, requiring this prior to referral will secondarily improve buttonhole use across the system. Nevertheless, Rita has made me forget almost all of my frustration on waiting so long. I wouldn’t trade her for anyone.


3. (Kaiser) I became aware that Kaiser has contracted with some excellent outside units for over a year now specifically for access to the NxStage only three weeks before I started my own training. It is a shame for Kaiser to lose the good press it deserves for going forward with this NxStage access system wide by not having adequate communication to all involved, especially to the patients. For issues 2&3, I will give my input to those that can make a difference at Kaiser that I know personally. Kaiser has a long history of improving dialysis care for all patients, so with Rita by my side, I will move on and hope that my own experience makes it a better experience for those that will follow me.

Now, for the Ugly!!! Within 30 seconds of hooking up to the NxStage and cranking the system up to speed, I experienced the onset of an overwhelming “taste” that I have never experienced before. In addition over the next minute, I developed nausea, a mild burning in my chest which was followed by 24 hours of chest congestion without phlegm production and mid abdominal discomfort lasting for the majority of my dialysis session. I did a progressive rinse protocol the rest of the week and was able to eliminate the physical side effects with 2.5 L rinse on Friday, but I still had a fairly strong plastic taste that reminds me of Nitrous Oxide.

I have looked into this on the internet and found several people who have complained of this on Home Dialysis Central and on IHD. However, I have yet to find any references to this on a PubMed and Google search. But to my surprise, after reviewing my NxStage handbook from cover to cover today (OK, I skipped a lot of the alarm section) I came across the following discussion in Appendix D, Synopsis of Clinical Study in their discussion on Unanticipated Adverse Device Effects (UADE):

One UADE, a plastic taste in mouth, was reported during the study. This was later independently adjudicated as dysgeusia and did not meet the definition of a UADE. This event was further classified as mild in severity, therapy-related, seemed to be quite transient and not associated with any serious or lasting consequences. The full analysis was provided to the FDA during the study.

As a physician who has observed many adverse reactions to medications, I would not define my experience as simple dysgeusia. It was by all accounts an Unanticipated Adverse Device Effects (UADE). With the severe and overwhelming taste resulting in nausea, abdominal discomfort, burning in the chest with congestion lasting for several hours, I would report this as an adverse reaction to therapy if any of my own patients had experienced this sort of reaction after I prescribed a therapy for them. I am aware that not all patients even notice the taste, and even fewer have such adverse physical complaints. It brings to a head the entire issue of BPA/Phthalates in dialysis equipment. I will spend more time on this issue over the course of my training. However, in preparation for this, I would recommend reading a few quick links on the adverse effects of BPA (here, here and here)

So, in summary, I am quite excited about feeling somewhat like a real person again with NxStage. Aside from the issues above, I will adapt my own habits to minimize any adverse effects and stay on the NxStage until perhaps someone else invents a better mousetrap. I look forward to gaining my independence that has been sorely tested in the last two years of incenter care. NxStage is a step foreword, but I believe that there are several issues that need to be addressed to improve it more.

Sunday me blog - what's the story?

By Bill Peckham

This is an overdue post about what is going on with me and this blog. As I have mentioned I have had a high hemoglobin this year without taking any epo. In the last month and a half my Hgb has gone above 16 which led, on a half dozen occasions, to me dumping my blood circuit after dialysis instead of rinsing back. It turns out that having a high Hgb can feel a lot like having a low Hgb. Most dialyzors can guess their Hgb after a few years of CKD5 anemia – I usually can correctly guess if my Hgb is 13 or 12. It turns out a Hgb of 16.7 feels to me just like a Hgb of 10 or 11. This year I've found that the less energy I have, the higher my Hgb.

I don't know why that is the case but really since March I have not had the level of energy I usually have and want. There were tests and long story short there appears to be a renal carcinoma on my left kidney. This diagnosis was made in mid-May. I had an emotional reaction to the idea of having cancer. No one wants to hear that word but at this point the tumor is small – about an inch around – so it is fortunate that it produced epo otherwise it could have grown undetected for a long time.

On top of this at some point I picked up a virus. The Thursday before Memorial Day weekend NKC had their annual Breakfast of Hope fundraiser and one of my guests was sick the next day and through the weekend (I didn't find this out until a week later). On Monday my Mom and I both got sick (my Mom came out for the Breakfast; we had planned to go for a road trip but we ended up staying in the Seattle area), first with diarrhea and vomiting, which we blamed on a milkshake we shared one day at lunch. By the next weekend I had a fever, chills, still with the D & V and even now, a week later, I have a cough/congestion and general fatigue.

(Obviously the thought that it was the H1N1 virus has crossed my mind. I have been very disappointed by the administration's response to the spread of H1N1; I am very worried about what the spread of H1N1 means for this Fall but there is only so much I can process at one time. They no longer test for the virus so there is no way to know. Whatever I had (have) it was (is) unpleasant). I had my blood cultured for a bacterial infection, it turned up negative, but a high white count triggered a course of IV antibiotics, which will continue M-W-F next week. I think I should have been on antivirals but I'm on antibiotics - go figure.

That's the background; here's the situation going forward. Throughout this period – from mid-May until now – I have been trying to organize having my kidney taken out. This is where I have failed. I still don't have a date for the surgery. However the process is supposed to work I haven't been able to get it done which is depressing and stressful. I can tell that people around me - friends, family, kidney center staff, my docs - are doubting my ability to function on my own. Suggestions to go to the ER or switch to incenter dialysis wouldn't be made if I had a spouse or lived with family. I can't say how this process would have been different if I had had a spouse to browbeat docs into doing their job. Maybe I would have already had the kidney out, which would have been my preference, but what can I say? Who knows? If I had wheels I'd be a wagon.

I'm single. I live alone. I don't like asking for help. This is not a new thing.

Now here it is June 7th, my best guess is that I'll have the surgery in July. There will be two surgeons – one to take out my left kidney and one to take out my gallbladder (the CAT scan showed gallstones which is an "as long as you're in there take care of it" sort of thing). They can take samples of proximate lymph nodes but the lymph node(s) that look sketchy on the CAT scan are not easily accessible. Bottom line it will depend on the pathology results what next steps are taken.

As far as DSEN, I don't know where this is going either. There is a lot going on policy-wise. Plenty to write about, as always but the provision of dialysis has never seemed so fraught with change. Come October the framework under which I've been writing will change, I'll no longer have an official advocacy role in the industry. This blog has not been a personal journal and I don't want to turn it into a day by day account of my frustration with and/or inability to get the care I need.

But I know people want to know what's going on and how they can help. I think this is just going to be something I have to muddle through and I'll do the best I can. I have to pick and choose how to spend my energy - I make those choices as best I can - but spending a lot of time talking about it isn't how I want to use what energy I have. I'll comment to this post as things progress, respond to comments here or via email as best I can, decide my future one day at a time and hope things work themselves out.