Dialysis from the sharp end of the needle

Australia and New Zealand evaluate NxStage

By Bill Peckham

Australia and New Zealand have an initiative called the Australia and New Zealand Horizon Scanning Network that is tasked with to providing advance notice of significant new and emerging technologies. They have a paper posted, a "Prioritising Summary", from last November looking at the NxStage. NxStage System One home dialysis for patients waiting for kidney transplantation (pdf link) concludes that it is a technology to watch:

The NxStage System One provides greater versatility for patients requiring dialysis and may be especially useful in rural and remote populations. Based on the high need and potential great gains from the successful introduction of such a device into the Australian market and that there is a large ongoing trial it is recommended this the NxStage System One be monitored.

There wasn't any communication with NxStage that was made to inform the report; it's not clear that reports from the Scanning Network ever amount to anything. What caught my eye was the title phrasing, for patients waiting for kidney transplantation. Are all people on dialysis in Aus/NZ considered to be waiting for kidney transplant? When the report went through the Aus/NZ incidence numbers they didn't parse out those on dialysis not waiting for a transplant vs. those waiting. It's an unusual way to put it.

The report does contain an error in magnitude:

A large trial of 5,000 RRT patients is underway with the NxStage System One (6 dialysis periods per week) being compared to conventional centre based haemodialysis (3 dialysis periods per week). The trial will run over three years (Jaber et al 2008).

This is the FREEDOM study which will include up to 500 participants at 70 clinical sites. Back to the issue of populating studies - it'll be hard enough to randomize 500 people. 5,000 is not going to happen.

I know many people in Australia would like to have a transportable machine, I don't think this report will make it any more likely to happen. It's a generalist committee writing about a very specific segment of medicine; it's hard for me to see how they can make a useful contribution.

NxStage roadtrip recap

By Harvey Wells

I'd like to thank Bill for all he does to help educate and bring awareness to the dialysis community.  He has inspired me to try and be more active both in my life and to help others who are on dialysis.  I hope that what I have to say will help others and be as informative as those that contribute on this site.

This video of my power point presentation to the sales force for NxStage was a recap of some of the memories and stops I made on my journey last summer with my grandsons and nephew.  I wanted to express my appreciation to NxStage for providing a dialysis treatment that not only allows me to live but it gives me the opportunity to be active and enjoy my life with my family.

Like many that are on traditional 3 times a week in-center dialysis treatments, my life was turned upside down.  I experienced the low energy level and the roller coaster rides that often occur with typical every other day treatments.  I tried to remain active and even travel while I was in-center but ran into the road blocks that can frustrate and create more problems than you already have.  When you are a transient patient you have to be willing to adjust your time and/or day of treatment as well as being flexible to different rules and procedures.

The flexibility and freedom that NxStage offered was my attraction to the treatment but as I learned how to treat myself the feeling of independence and control you regain over your life is euphoric.  I soon realized the frequency of the treatments provided the best benefit - it makes you healthier!

The prospect of dialysis is often overwhelming and crushing, the idea of being tethered to a machine can be devastating - but like many obstacles that life brings it's not the problem that you face but how you react to it.  Many times the solution to our problems can be found in looking at what others have done and the web is filled with testimonials about the benefit of NxStage and all that needs to be done is to believe that like thousands of others you can do this too!

"Obstacles are great incentives." Jules Michelet

NxStage dialysate flow rates

By Peter Laird, MD

In response to Zach's comments (here and here) on the resurgence of home dialysis and NxStage dialysate flow rates, if you look at the NxStage theoretical 100% dialysate clearance when flow rates are at 100ml/min and then follow the curve up and to the right, you should be able to get better clearance by increasing dialysate flow rate up to 200 ml/min and still be near the theoretical 100% clearance that the NxStage system is based upon. To better illustrate this, go to the following link from a Well Bound PPT lecture (pdf link), (may load slow) to the 19th slide titled: HD therapy dosing with NxStage.

slide from Wellbound pdf

This graph demonstrates the theory behind the NxStage low dialysate flow to take advantage of the "100%' efficiency at that part of the curve. Looking to the right of the 100 ml/min flow, we see that the curves do not diverge until nearly at the 200 ml/min. So, in answer to Zach's first question, I do believe that there is a potential to increase the efficiencies of total clearance on NxStage with a higher dialysate flow rate up to the 200 ml/min level. (I am still looking for a nephrologist that will prescribe the maximum dose/patient instead of the stale “adequate” dose derived by urea clearances.)

Just a quick editorial note. It appears to be common practice to check the urea clearance on NxStage and then adjust the time and amount of dialysate to that number. Most of the time this is to reduce the time and dialysate dosage to the level of an adequate clearance goal. I find this to be a continuation of the fallacy of dialysis adequacy that we continue to warn about with usual in center care. Old American habits die hard. If we have learned anything from our overseas colleagues, the two most important factors in dialysis survival is the combined dialysis dosage of frequency and duration. Lowering dialysis dosage based on an arbitrary number with dubious clinical validity is to ignore what have learned about middle molecule clearance that is modifiable mainly by increased frequency, duration or best of all maximum frequency and duration with nocturnal regimens.

Now as for the second part of Zach's question on high flux vs. low flux artificial kidneys. In the HEMO study, this was answered quite well that the expected improvement with high flux dialysis was not found: (the total per session length in the HEMO study was not long enough to find the survival advantage that nocturnal studies have found.)

In summary, although the effect of the dose and level of membrane flux may vary among selected subgroups of patients, the primary results of our study indicate that, with a schedule of thrice-weekly dialysis, neither an increased dose of dialysis nor use of a high-flux membrane substantially improves survival, reduces the rate of hospitalization, or maintains serum albumin levels as compared with a standard dose and use of low-flux membranes.

Thus, those that prescribe NxStage dialysis therapies for their patients will need to acknowledge that not only is increased frequency important as they are beginning to realize, but also that total duration/week is likely the most important survival factor. I am frankly surprised that NxStage has only achieved a 10% annual mortality for the patients using their machines especially given the much younger age of the NxStage population. Perhaps the lower clearances of low volume dialysate combined with only 12-15 hours/week average dialysis duration with the usual short daily NxStage regimen is simple not enough of a good thing. Experimenting with dialysate flow rates up to 200 ml/min is justified in my mind simply by observing the dialysate flow curves above.

Yet, we are still fighting the battle even with NxStage home dialysis of increased dialysis total dosage. Why stick to only half of the dialysis dosage equation: dosage = frequency X duration. The data from Australia is clear (pdf link), total time/week on dialysis is perhaps the single most important factor in survival. Increased frequency is definitely an important factor as far as quality of life improvements, but total duration of over 20 hours/week is independent of frequency for improving survival to the 2% annual mortality rate. Frequency alone at a low daily duration does not get us to that survival level.

I am encouraged by the NxStage option which I am still on the wait list for through my insurer, not through my FMC unit. I do have the option of the K machine through my FMC unit, but that would leave me dependent on usual care at dialysis units that do not have the professionalism of my home unit whenever I would visit my family out of state. After several weeks of feeling terrible last summer in out of state units, having control of my dialysis sessions with my own portable machine wherever I am is my highest priority at this time.

Thus, aside from some potential short falls with the NxStage system that must be taken into account, I do believe that if I can convince my nephrologist that duration and frequency are much more important than hypothetical urea clearances and get over 20 hours/week of dialysis on NxStage, then I can gain the survival advantage that I am seeking with the home dialysis treatment option.

Medicare should routinely reimburse 183 dialysis treatments a year

By Bill Peckham

I didn't recognize this post that Zach commented on today; even worse I don't really remember responding to Lori's comment but then I saw the date. I was preoccupied in Chicago at the time, August '08 is a lost month. But it's a good post that touches on related questions.

Zach's comment today comes back to the point of Peter's post - the question of dialysate flow rates (Qd). I haven't heard anything to suggest that NxStage is moving to higher flow rates. I will say that nocturnal seems to diminish the relative impact of low Qd. My guess is that every other day nocturnal on the NxStage using the same weekly amount of dialysate would feel better than 6 day a week 2 hour runs.

I think compared to doing 6x week with 20 liters of dialysate, you'd feel better doing 35 liters every other day for 7 to 8 hours (240 liters/2 weeks vs. 245 liters/2 weeks). This offers an opportunity. The nation's Medicare Administrative Contractors (what use to be called Fiscal Intermediaries) should be directed to pay for every other day dialysis - 182 or 183 payments a year instead of 156 currently routinely reimbursed.

It is bad Medicare reimbursement policy to routinely require a dialysis weekend every week. It may be that the dialyzed would continue to choose to dialyze three days a week; it may be that units would continue to close one day a week. No matter. It should not be a decision made by reimbursement policy.

More thoughts on the meaning of NxStage freedom

By Bill Peckham

What spurred my Thanksgiving post was how I have heard freedom described and presented in various conversations with people in the business of providing dialysis, or in the business of supporting the businesses that provide dialysis. Their presentation of freedom wasn't fully describing my experience. When home hemodialysis is described (NxStage is the primary home hemodialysis machine in the US, the one I use, but I think this is true of the modality) or its advantages imagined, it is in very concrete ways e.g. you will be free to set your own schedule, you will be free to receive a high dose, you will be free to dialyze on a boat in the San Juan Islands (see 5/20-5/30 of May '08 archive). Those are all good things; things that I am happy to take advantage of, but those aren't profound freedoms. They are clinical and logistical improvements.

The freedom to struggle is the freedom to pursue happiness vs the freedom of resignation where happiness has to find you. It isn't easy to pursue happiness, especially when you have severe chronic kidney disease and are receiving only a portion of a healthy dose of dialysis. Getting just a portion of a healthy dose of dialysis leaves you unprepared for the pursuit, for the fight, for the struggle. In this under dialyzed state, resignation is the best option.

A high dose of dialysis gives me a chance. It does not give me a result. It gives me the freedom to struggle for the result that I want. It is still a struggle but I feel like I have a fair chance. For me, for now, I'm chasing relevance. I want to improve the provision of dialysis. Getting a proper dose of dialysis does not mean I'll succeed. It means I feel up for the chase. It's the freedom to try.

I am thankful for NxStage and the freedom it provides

By Bill Peckham

I was driving, listening to the radio when the conversation touched on (at the 19 minute mark) freedom and the writings of Howard Thurman. I've been thinking about freedom lately. Freedom in the context of dialysis, in the context of home dialysis. Does home dialysis provide freedom? And how so? I think it does, but not in the way it is usually presented.

Often it is the flexibility of managing your own schedule that is said to provide freedom. The freedom to have the room warm and the TV loud while you dialyze. The freedom to set your rules in place of the dialysis unit's rules. Those are not profound freedoms. Thurman spoke of profound freedoms.

The freedom of innocence, the freedom of resignation and the freedom of struggle. Driving along, listening to the radio, I realized these three freedoms sum up my kidney experience. Initially, with working kidneys you have the freedom of innocence. You don't know what you have, you take your kidneys for granted and go about your life. This freedom is illusory, but people, indeed most people, can live long lives enjoying this freedom.

This is the freedom that people with severe kidney disease, with CKD5 miss. When you tell someone on incenter dialysis that you'll get your freedom back with a high dose of dialysis provided at home this is what they hope you mean (someone with a transplant can cover freedom from the transplantor point of view). It is imagined that at home things will be as they were, that they will get back to a freedom of innocence. A high dose dialysis provided at home is a great form of renal replacement but it is still a treatment, it will not let you reclaim your renal innocence.

On dialysis it is the freedom of resignation that is most commonly experienced. Making the best of a bad situation. Thurman quotes a spiritual, "I've been down so long that being down don't bother me." It's acceptance. The acceptance of nausea. The acceptance of low energy; of fuzzy, uremic thinking. There is a freedom in this, indeed I called myself a dialysis success story because I had accepted being on incenter dialysis. I felt liberated by this resignation, free to travel but also free to be self absorbed, free to be disengaged.

Incenter dialysis only took me so far, acceptance could only take me so far. Incenter dialysis left chronic kidney disease draped around me like a wet blanket, smothering dreams and ambition. For a while I sang being down don't bother me because I didn't know I didn't know I wasn't getting enough CKD5 medicine. I didn't know I wasn't getting enough dialysis. I didn't know things could be different. Because I didn't know, I didn't seek out change.

By chance I started dialyzing at home more frequently in September 2001, I started getting a higher dose of dialysis. Since January of this year I have been using the NxStage System One to dialyze over night, sleeping through a process that use to fill my evenings. It is now that I say NxStage has given me my freedom. On this day I give thanks for this freedom.

It is not the freedom of innocence: I'm kept alive by a machine, my innocence is gone. It is not the freedom of acceptance: mere acceptance is no longer acceptable. It is the freedom of struggle. The freedom to struggle. The freedom to take on life. The freedom to work for change. The freedom to carve out a niche in an indifferent world. I like this struggle, the freedom of this struggle. Over night treatments on the System One reduces dialysis to one of life's details, leaving me to engage in the struggle. I am profoundly thankful.

Dialysis in the new media

By Bill Peckham

Back on August 12th Anna posted Dialysis in the media about the trip Harvey Wells was taking around the country in an RV, stopping along the way to show the wonders of the System One and a proper dose of dialysis to people at units across the country. Here is the rest of the story

I didn't know or had forgotten that the trip took Harvey out to Seattle ... but for my call to caregiver duty I am sure we would have met. I think RV travel with the System One makes a lot of sense - basically they're boats with wheels or boats are RVs that float. Either way what a fun thing to do with the grand kids.

Search Google for recent videos relating to dialysis and you'll find many relating to the NxStage, including a whole series of camping in the woods with the NxStage System One videos from girlXtreme (on a side note, Jennifer may be the first to use the System One in the woods sans RV or boat but she can't claim the first hemodialysis treatment in the woods. I have seen photos of Mike Matson dialyzing on a rock bar along the Snake River during a multi-night raft trip in 1978 - he was using a Redy machine)

If a picture is worth a 1,000 words then a YouTube video must be worth a 1,000 brochures. The internet, through peer to peer communication, is helping to raise the awareness of dialysis options outside the center-centric system. Videos from the people who have experienced getting more dialysis will continue to testify to the difference more dialysis makes. Some people will be motivated to load the grandkids up and take the show on the road, others will simply show themselves continuing to live their lives.

That's what dialysis is suppose to do, let you live the life you were meant to live.

How can a unit afford high dose hemodialsyis modalities?

By Bill Peckham

I've not been posting lately but I have been reading Peter and Anna's posts as well as the comments. Lori commented on Peter's August 13th post The Resurgence of Home Hemodialysis. Lori wrote:

We are limited to reimbursement for 3 treatments per week by our MCR FI and by our local commercial payers. We can't afford this therapy unless we are reimbursed for a greater number of treatments. It would be nice if we could get a more uniform protocol for MCR payment around the country - as is, it is not a level playing field.

This is an issue. Dialysis providers don't bill Medicare directly - they deal with Medicare chartered fiscal intermediaries (FI). There are different ones around the country and they change from time to time. The word on the street is that some fiscal intermediaries will reimburse for more than the standard number of treatments, others won't. In cases where the FI is paying no one wants to say anything to rock the boat so it is hard to know how payments very from FI to FI. But clearly there is some variation.

I support what Lori is saying. I believe four treatments should be routinely reimbursed - allowing for routine forth incenter treatments and additional support for home high dose hemodialysis and new devices like the NxStage System One. Like Lori I also think the H and Ks are great machines (I wish I knew definitively about the status of the Baby K), as is the B Braun - really all the modern machines are technological marvels though daunting at first sight. One thing I would like to know: which financial number is Lori's unit looking at when they decide the NxStage doesn't pencil out financially?

Is her unit looking at what Medicare pays - 80% of approved charges; what Medicaid pays (which varies greatly from state to state), Medicare's approved charges; or the average reimbursement for the patient population throughout the provider's census? I believe that the right number to use is the average reimbursement for the entire patient population in the provider's census.

I think the average rate of reimbursement at a US dialysis provider would be enough to cover the cost of a NxStage program. Dialysis providers gain access to lucrative private pay patients because they are serving Medicare beneficiaries. Medicare feeds private payers to the dialysis companies in exchange for lower prices. The fact that different insurers are paying different prices does not mean units are forced to offer care based on the lowest reimbursement. Care should be based on the average reimbursement.

PureFlow Users: Chloramine Test Strip Recall

By Anna Bennett

This is important for NxStage Pureflow users:

I just received a registered letter from Fresenius (who deliver  my medical supplies) informing me that the Hach Test Strips in some lot numbers have been recalled. (fortunately, none of mine are in the bad lot numbers)

Here is a copy of the Hach recall letter.  (from the manufacturer's website)

Here is the announcement text from the manufacturer's website:

Mar Cor Purification
Important Announcement

Important Announcement to all HACH SteriChek Test Strip Users

Hach Company is voluntarily recalling its SteriChek “Sensitive” Total Chloramines and Residual Chlorine Reagent Strips. Hach Stock Number: 811909, MCP Part Number 185-40-048.

If you have these test strips and have purchased them through Mar Cor Purification, please contact Customer Service at 800-752-1402 to obtain a Return Material Authorization (RMA) Number and return the affected lot numbers of test strips to Mar Cor. Serim HiSense Test Strips are available as an acceptable replacement until the issue is resolved. The MCP part number for this item is 185-40-029.

We apologize for any inconvenience this recall may cause and we will do our best to ensure you are able to purchase and receive replacement testing supplies to meet your needs

This is very important, as the strips are being recalled due to sensitivity issues.  Chloramine is very dangerous to have in dialysate.  There is a very good description of why chloromines are dangerous in the online book:  Complications of Dialysis, page 38 section G.

For any home Pureflow user (That was me until last week when my Pureflow use was discontinued by my unit in a totally unrelated matter) testing for chloramines is our last line of defense from contaminates that could potentially kill us.

If you use Hach Test Strips and haven't recieved a letter from your vendor, call the manufacturer's number listed above.  Check your Batch and Lot numbers.  This is your life.

NxStage Training Diaries

By Anna Bennett

In the Fall of 2007 I started training on NxStage.  Inspired by  Epoman's 2006 training diary on IHD, I kept a daily diary titled NxStage Training Starts, which I casually subtitled "The good, the bad and the bloody" . My nurse now prints my training diary (all 11 pages of it) and hands it to her new patients Dialyzors.  (If had realized that was going to happen, I would have been more diligent in my editing and spelling)

I think that keeping a dialysis training diary (whether private or public) is a great way to remind yourself of what happened, because you are learning so much over a short period of time.  Reading Training Diaries is a great way to get a feel for the training experience, and is a good introduction to the ups and downs of home dialysis training even though each person is different, with different set ups and needs.  I think that the more that we all share our experiences, the less intimidating starting home hemo can be.

The Resurgence of Home Hemodialysis

By Peter Laird, MD

In the latest Medscape nephrology online journal there is a quick video blog on the Resurgence of Home Hemodialysis that discusses in general terms some of the benefits associated with home hemodialysis.  I am pleased to see the involvement of UCLA and other academic institutions in this “new” modality. 

It should be noted that Allen Hull, MD is associated directly with NxStage and the reported 50% improved mortality benefit of NxStage is a significant improvement over conventional three times a week incenter hemodialysis, but it does not achieve equivalence to other quotidian dialysis regimens with conventional dialysis machines at home or incenter.

The achilles heel of the NxStage machine is in the low dialysate flow rate.  In an article published in 2007 on Kaiser’s experience with the NxStage, the increased usage of phosphate binders in the daily dialysis group is a sobering report of where NxStage is in the pursuit of optimal dialysis at home.  In my opinion, it has not yet arrived with the NxStage technology, although it is a significant improvement over incenter hemodialysis.

The concept of an easy to use home dialysis machine is where we need to proceed here in America, yet the issue of simplicity of operator use must in some manner be tied together with a higher dialysate flow rate to achieve optimal dialysis.

Interestingly, there is another dialysis modality utilizing sorbent dialysis technology that may offer a solution to this problem where high dialysate flow rates are achieved through recycled and cleansed water.  One of the benefits of the sorbent system is achieving ultrapure dialysate which in itself promotes reduction of Beta-2 microglobulin by decreasing exposure to endotoxins in the pure but not sterile dialysate used in conventional hemodialysis.  This likewise reduces patient mortality significantly.

In my opinion, using ultrapure dialysate combined with an operator friendly daily dialysis regimen will open the door to optimal dialysis here in America.  The question appears to be convincing corporate America that optimal dialysis at home will turn into marketing ventures where saving lives becomes profitable to the company that can produce the simplest machine with the greatest clearances and reduction of inflammatory cytokines by reduced endotoxin exposure.  It is my hope that the marketing factors will converge with the humanitarian factors to re-engage America as the lead nation for optimal renal care, instead the lowest of all modernized nations as it stands today.

Dialysis in the media

by Anna Bennett

Dialysis in the 21st century is not just medical science, it is education and PR as well.  I've been contacted by publicists who are being paid by both my provider and NxStage.  Home hemo is big business that saves lives, I'm not surprised that they hire PR firms to coordinate their image in the media and promote their products.

NxStage has partially sponsored Harvey Wells, who is currently touring the USA in an RV with his family and his dialysis machine.  Teaching/showing people their options for dialysis is a great thing.  Lifting the veil and showing people hands on how they can take control of their own life and treatment is half the battle.  Bill has been doing this for years, sponsored by his own hard work, and in his early trips with CKD, his grandparents and his mother.  (Speaking of his mother, I haven't had any updates today, but he knows that our thoughts are with them)

The cross country Dialyzor was in NYC this week, and the local media did a video and story  (Dr. Wasser in the video is my nephrologist).  In these media obsessed times, it is nice to know that some stories really do make a difference.

Home Hemo - Trash & Recycling - My Carbon Footprint

by Anna Bennett

I dialyze at home using NxStage with Pureflow.  Which means that I generate a lot of garbage on a daily basis.   As I live in NYC, I follow their guidelines for recycling.  Each jurisdiction has it's own guidelines/rules - I advise that you check yours for proper disposal instructions.  Here is how I dispose of my spent dialysis supplies:

Cardboard Boxes:  I break them down with a box cutter, tie them up, and leave them curbside for pickup on recycling days.  Bill puts an ad on craigslist and gives his boxes away.

Dialysate Bags & Warmer bags (made of pvc): When I use them, I put them in a black garbage bag, and throw them away with the regular trash.  In NYC, PVC is not considered recyclable.

Pureflow sac (made of polyethylene/nylon): again, NYC does not accept this as a recyclable, so I send it with regular garbage.

Cartridge (mixed materials): Because a used cartridge has been exposed to blood (even though it is rinsed with the rinseback) I always leave the saline bag attached to the cartridge when I am cleaning up after my run.  I was told that the cartridge assembly it is to be bagged in a black bag, and treated as garbage.  The logic behind this is that after rinseback, the blood exposure is equivalent to "heavy wound care" and thus would be discarded as regular household trash.

Purepak:  every 90 days, one goes out on the trash (although it is usually taken by trash pickers before the garbage can even be collected by the city  - I wonder what they think it is?)

Syringes & Needle Sets: these are considered medical waste, and are not to be thrown out with regular garbage.  I was given a sharps container, and I simply bring my used container to my monthly clinic visit and exchange it for an empty one.

The upshot to this whole rundown is that I generate a lot of trash on a weekly basis.  I wish that there were some way to be able to recycle the dialysate & pureflow bags at least. There have been numerous blog posts and discussion threads on this subject - but nothing official from NxStage or any of the providers that I have queried.

High dose home hemodialysis data registry made available by NxStage

RenalWEB links to a NxStage press release, NxStage Announces Access to Demographic and Outcomes Information for the Growing U.S. Daily Home Hemodialysis Patient Population. This looks like it'll be a great source of data to advance the usage of healthier forms of hemodialysis.

I briefly checked out the site the biggest news is that in addition to home daily hemodialysis Outcomes being:

associated with a number of clinical improvements including reduced fluid overload, improved hypertension, reduced LVH, and improved health-related quality of life – known to be correlated with improved outcomes (morbidity and mortality) in dialysis patients.

The data also shows that:

On an unadjusted basis, transplantation rates are higher than those seen in PD and HD, and mortality rates have been notably lower.

Of course the deniers will point to the "unadjusted" and the relitively small (but growing) numbers, however if there is a significant selection bias then you'd expect the people remaining incenter would have a corresponding decrease in mortality and transplant rates - I don't think that is being seen. I think a huge range of people can do home daily hemodialysis - my observation is that zip code, work schedule and access to information are the best correlates to use.

I'll be interested to look at the site in more depth and hear thoughts from any of my cobloggers. Is there an Aussie registry?

 

A new sleep aide? Dialysate - slightly chilled

by Anna Bennett

As I sat in the sweltering heat of a NYC July, I decided to try something.  It was in the high 90's both inside and out , my a/c shut off while I was setting up my NxStage and I didn't realize it until I had already cannulated myself.  My solution?  I recklessly turned off the warmer.  I was going to try dialyzing cold.

It worked, and I was quite comfortable during the entire 3:45 run.  (I do not advocate doing this BTW)  Which led me to think about temperature, and I found an interesting article in the New York Times Techniques: Cooler Dialysis Fluids May Help With Insomnia and Fatigue  this article was based on an Emory University study published online Feb 19, 2007 in the Journal of Sleep Research Volume 16, Issue 1, Pages 42-50.

From the abstract:

The three-phase randomized trial was conducted in a research facility. After one acclimatization night, subjects were readmitted in the evening on two additional occasions for 42 h and received HD the next morning in the warm condition (dialysate 37 °C) and cool condition (dialysate 35 °C) in random order. Continuous proximal skin temperature (axillary, T_ax) and polysomnographic measures of sleep were recorded the nights before and after HD was administered. Highly significant findings included that the time course of T_ax was markedly affected by dialysis temperature. There was a greater drop of T_ax in the early morning following the warm condition than during the baseline nights or in the cool condition. Logistic regression indicated that the odds for the occurrence of sleep and its deeper stages were strongly and positively associated with T_ax. Time of sleep onset was earlier in the cool condition (P = 0.03) with trends toward longer total sleep times (P = 0.09) and shorter rapid-eye-movement latencies (P = 0.09). These observations suggest that the use of cool dialysate during HD may improve nocturnal sleep by decreasing sympathetic activation and sustaining the normally elevated nocturnal skin temperature until later into the morning hours.

In summary, (based on a seven patient survey) by lowering the dialysate temperature by just 3 degrees, people fell asleep an hour earlier and slept an hour longer.  I'll be looking for the results of the expanded survey in the future.

Join caregiver web conference Thursday July 17th, 2PM EST

Lately there have been many opportunities for individuals with CKD to participate in Webinars and Healthline phone conferences. Tomorrow there is a web conference for caregivers, particularly caregivers to someone dialyzing at home with the NxStage cycler:

There is still time for you or someone you know to register for our educational web conference, “The Partner’s Role”, which is being held tomorrow, Thursday 7/17, beginning at 2:00 p.m. EDT.

This is the 3rd in a series of live web conferences, targeted to patients and family members wanting to learn more about daily home hemodialysis.  The series is unique, as each topic will be covered by both a professional and an actual NxStage user.

For this program, Dori Schatell, Executive Director of Medical Education Institute and developer of the Home Dialysis Central website (www.homedialysis.org) will be our first speaker discussing results of research she has done interviewing partners and home patients on how they make it work.  Then, we will have a panel of three care partners to NxStage patients share their experiences and discuss topics we feel are important to those considering home dialysis.

Of course caregivers can and did listen in on the previous educational sessions produced by the AAKP, Home Dialysis Central and previous DaVita/NxStage productions but is nice to see one geared for caregiver's particular point of view. To register you need to know that the session is:

Thursday, July 17, 2008 – 2pm EDT

Register for this conference by visiting kidneysupport.net or contacting Caitlin Leahy at (800) 681-4776 or leahy@ja-online.com for the call-in information.

For more information about home hemodialysis, visit DaVita.com/Home   or NxStage.com.

Register now while you still can.

I have a portable dialysis machine (in theory)

By  Anna Bennett

Mel's post about the Australian Dialysis House Swap program, made me want to pack a bag and fly to Australia (Bill isn't the only one with a wanderlust co-morbidity).  But, they have national health care and dialyze on Fresenius 4008 B's (my insurance doesn't work in Oz, and I only speak NxStage).

The limitations of NxStage being a USA only product and the cost of transport of fluids makes international travel with my machine cost prohibitive.  So, when I go to London (home for me), it is temporarily back to in-center, cash upfront (I'm not on the NHS).

Taking into consideration the recent crackdown of the domestic airlines when it comes to baggage, I am afraid that even with Dori Schatell's informative article Leaving on a Jet Plane (about your rights when flying with medical equipment) I worry that I'd get stuck in the same situation that Bill had with Delta earlier this year.  Honestly, I can't deal with that added stress, not knowing if I'll be extorted into paying an illegal fee up front, and then have to spend hours on the phone reversing the charges.

Bill sent me an e-mail asking what I thought of a Home Swap Program for NxStage users here in the USA. On an informal basis, I am all for NxStage house swap, I was actually quite excited about the concept of being able to fly places without the burden of carrying the cycler and it's appendages (warmer, pole). 

But reality reared it's oppressive head.  Without involvement of the units, I see many liability roadblocks (since the machines are leased and not owned by the users).  I also know that each of us on the System One have our machines set to unique FF and rinseback amounts (easily changed, I know, but generally set by the training unit). There is also the uniqueness of each of our situations, in the case of Bill & I, we dialyze without partners, and I know that some units do not support that (it is time for them to come around, but that is fodder for another post).

The case has been made that people on home hemo are healthier.  I think that this is a convergence of higher volume dialysis, and the fact that the dialyzor is engaged in their own well being.  We are no longer passive in our treatment.  And with this new found vitality, it would be great to have the freedom to travel.  I know that NxStage is fully portable for road trips.  (Bill has chronicled a good one from Seattle to Chicago).  But sometimes, you just want to be on the other side of the country, and driving just isn't efficient.

Rather than a USA NxStage House Swap, I'd like to see a loaner program with local dialysis units, just like a rental car, so that when you get to a city, you can pick up a machine to use. Fluids can be shipped ahead.  Or, since I am now in the habit of making wish lists, I'd love see a smaller/lighter suitcase sized cycler.

AAKP supports home hemodialysis pilot program

The AAKP has posted a letter it sent on April 22nd to Senator John Kerry of Massachusetts (PDF link). It's a little curious because it's asking the Senator to support "a home hemodialysis pilot program in Medicare", which would be great but this sort of thing requires legislation and unfortunately there's not been any frequent hemodialysis legislation this Congress but maybe the AAKP knows something. In the last Congress (the 109th, we're in the 110th right now) HR 5321 the Access to Better Choice in Dialysis Act of 2006 was introduced in House but not the Senate. For legislation to have a real chance there needs to be a House and Senate version.

Even with a House and Senate version, at this point in the legislative cycle it would be unlikely for any new legislation to make it through the process. Of course the Senate can do whatever it wishes, they could tack a provision authorizing a pilot program on to another Medicare Bill. The rumor is that the Senate will try to include ESRD provisions in whatever Medicare Bill fixes the physician payment issue but bringing frequent dialysis into the discussion at this point seems unlikely.

There is another tactic one could use to improve the provision of dialysis by making it easier to start and run home hemodialysis programs - the appropriation process aka earmarks. Massachusetts has two powerful senior Senators - Kerry and Kennedy - they could support an earmark to pay for each home dialysis training session. Right now when someone trains to go home on the NxStage or any other modality of home hemodialysis they go incenter 5 times a week to train (with one on one nursing support) but the center is only reimbursed for three treatments.

There is a $20 training add on to the standard reimbursement but two sessions remain unreimbursed which makes starting a training program that much harder. A $2 to $3,000,000 earmark would go a long way to reimburse for every training session or at least two weeks of fully reimbursed training. Something. Additional support for home training will increase access to  much healthier frequent dialysis which is generally available only at home. Access to frequent dialysis should not depend on one's zip code - this would be an inexpensive way to support the current training centers and geographically expand access to healthier dialysis.

Size Matters (needle tubing size that is)

By Anna Bennett

Anna here, (again) I've been on dialysis for just over a year now,10 months in center and for the last 6 months, I've been self dialyzing alone at home on NxStage.  I've learned a lot in the past year, but there is always something new on the horizon.

During my NxStage training it was rather awkward sticking myself and then hooking up to the machine. I'd be tugging on the needles when reaching for the machine to make the arterial and venous connections. (I was using 15 gauge medisystems needles with 12" tubing)

Bill asked if I could try 16" tubing needles. Well, in one sentence, my problem was solved.  My nurse had never heard of them. (She is running a NYC home hemo & PD program with a staff of two (including her), I don't blame her for not being up with new products) This industry is growing so fast that we are all teaching each other.  With the product number in hand, my 16" tubing buttonhole needles were ordered.  Now, put on and take off is a breeze.

I feel that needles are a huge part of dialysis, using the right gauge, the right size etc.  Your access is your life.  Medisystems has been aquired by NxStage  - I'll be curious to see what develops.

NxStage spring newsletter

NxStage has the spring '08 issue of their quarterly newsletter Home at Last online. To subscribe switch to the healthier dialysis option - home dialysis on the System One.

How far is too far?

By Anna Bennett

Hello, this is Anna guest blogging - again.  During a recent e-mail exchange, in sympathy to my current situation, Bill posed the question: "How much are we supposed to put up with? When is enough enough?"  I've been thinking about that a lot over the past couple of days. It is a good question, and it begets even more questions - what is our relationship with our dialysis providers?  When are we the customer and when are we the patient? Are the two interchangeable?  How demanding can we be in regard to customer service? What recourse do we have?  We know that dialysis is a matter of life or death, without it we would die.  But "How much are we supposed to put up with? When is enough enough?"

The toughest part of home hemo for me, has been the orchestration of supply delivery.  I live alone, in NYC and I work a full time job m-f, although I live less than 10 miles from my office, it takes over an hour to get there via subway.  I get two week-day deliveries a month.  One delivery is from Fresenius with my medical supplies, syringes, saline, tape, gauze, chux etc.  And one delivery from NxStage, cartridges, saks, dialysate (if needed) pure paks, warmer bags, drain lines etc.  I've been having very well documented problems with my NxStage deliveries, which has caused a lot of stress. Stress that I could certainly live without.  But it is still better than dialyzing in-center. 

If I think of Dialysis as a part-time job, then I have a better perspective. NxStage are my vendors, and right now, we are having delivery issues, but I am in this for the long haul (or until I get a transplant).  Delivery screw ups aren't a life threatening situation, I have my unit for backup, but it sure is annoying and stressful.  I've found that for me, I have to step out of the patient/illness mindset.  It gives me a  more critical eye when dealing with my unit which provides a service,  my vendors which provide my supplies, and my insurance company which funds my home hemo night job.   How far is too far?  Well, delivery issues or not, I'm not stopping home hemo.  So, I live with it.  I call and complain when necessary, I vent on the internet.  So my answer for today to Bill's question is that my limits have been tested, but I have no real recourse, just raising my voice and being heard - hopefully opening up a dialogue  - that is just basic conflict resolution.  I never want to be a passive patient.  I too, am a dialyzor.

Dialysis patient takes control of her own care

By Anna Bennett

Hi, I’m Anna your guest blogger. That guy in the picture on the right is (hopefully) spending some quality time with Cairny and resting after his action packed week in DC.

So, the title of this post is actually the headline from a piece that was written about me in a local NY newspaper. Last year, when I started in center dialysis, I was told that because I live alone, I was ineligible for NxStage.  Well, thanks to the internet (IHD) I "met" Bill, read parts of his story and realized that I could do home hemo alone.  Armed with this knowledge, my journey began.  Bill has been an excellent resource for me and when I decided to be more active on the advocacy side of CKD5, I sent him an e-mail saying that my unit wanted me to do press, he said go for it. So I did. 

My unit hired a PR Agency in LA to coordinate everything, I first interviewed with a writer, who then wrote a press release, which was then distributed by the PR agency to various local papers in conjunction with World Kidney Day. A publicist was liaison between me & the reporter; we set a date for an interview in my apartment, so that she could interview me and watch me put myself on. We spent over two hours together. I showed her my supplies, I explained my set up, and then I sat down in my chair and cannulated myself. (I had primed the machine and laid out my "cannulation station" before she arrived)

The story is mostly accurate, a bit simplified. I cringe at the girls-gone-wild reference (but I can’t deny my… ahem “outgoing” personality…) the reporter told me that she had originally written “girl’s weekend” and her editor changed the reference. Also, there is a line "but a complicated series of procedures makes it nearly impossible to do alone."  My whole point was that it is completely possible to dialyze alone!  (I think that watching me go through my cannulation process was a bit intimidating for the reporter - seeing dialysis up close for the first time can be a bit much)

I wish that the article were more detailed on the clinical side, I used liters as units of measure (the paper converted them to cups?!?) and I described my a/v Fistula as a garden hose, I also wish that the word “fistula” had made it into the article. I was hoping that the article would be more about home dialysis – it was written more as an inspirational POV. But if the newspaper gets people’s attention, they can surf out the blogs/websites and read the technical details, then maybe more people affected by CKD5 will be exposed to and encouraged to try home hemo.

All in all this was a positive experience. I am still in contact with Kate McNeil, the reporter from the Riverdale Press, and I even agreed to contact her if/when I get the transplant call.

Here is a link to the story. (It was run on the front page of The Riverdale Press, a metro NYC weekly newspaper)

Alaska Airlines gets me home on time

My last meeting finished at 11:30; by 1PM I was checked out of the hotel.

The one hitch was that the hotel tried to charge me $120 for "bloody towels" which made no sense. There was a letter when I returned to the hotel Friday night inside the room, on the desk. It said that housekeeping was concerned about the "bloody towels" that they had to replace each day. For one thing I draped my two towels over the shower curtain rod each morning, which I understood to be a well established signal that I was willing to use them again. Each day it appeared that not only did I get new towels but also new sheets.

I didn't have a blood spill during my stay the only thing I could think of was that I caught my foot on the metal corner of the bed frame and it is possible that drying the area could have left a stain (which being the last area I dry, I could have missed it) but at no time did I have any inadvertent bleeding. I was confused. I went to the desk but it was just the night manager who knew nothing. When I went to check out I talked to Allen who indicated there were several stains the size of a coffee saucer. This made no sense and I asked to see the towels, which they said had already been discarded. After a couple trips to the backroom Allen checked me out with no extra charges. I don't know what to make of the situation.

After getting home and properly greeting the dog, I sucked it up and unpacked plugging in the System One and fluid warmer. They turned on and seem happy so I should be good to go tomorrow night. It'll mean two nights off but I just don't feel like dialyzing. I think after three consecutive 7.5 hour runs it should not be a problem. I'm going to an afternoon preformance of the opera Tosca tomorrow. It was one of the items at an NKCF Gala/Auction to support research, the people who won the bid are taking me (I'll count it as a perk of volunteering).

I tried to detail all the travel issues that came up - having to schlep 130+ pounds of stuff, possibly related weirdness at the hotel (maybe it was a reaction to the machine or they saw my water bottle of used needles), having to set aside extra time if there is a hassle at check-in (not this time but I still have to plan as if there will be) but it still well worth it. The two alternatives would have been to not go, which I reject, or dialyzing incenter on Wednesday evening (take Monday, Tuesday & Thursday/Friday off) and then restricting my diet or incenter Tuesday & Thursday, restricting my diet but not as much - assuming I could get an evening spot.Travel with NxStage is not without its adventures but the list of adventures I've had incenter, before the System One is much longer and the events more serious.

I love to travel and NxStage makes for some great travel.

Dialysis with drain lines

I finally sorted out the drain line issue and dialyzed last night in the normal manner thanks to Kathe. I imagine that I won't do that again but I am glad to know that using empty dialysis bags is an option. Overall doing the extended overnight treatments is a good fit with travel. Not only do I get more dialysis and all that represents - liberal diet, an enhanced sense of well being - dialysis while I sleep logistically allows a better trip.

I was able to go out to dinner when on previous trips I would have grabbed a bite to eat in a rush to get on so I could get to bed in a timely manner. Doing extended also means an end to setting the alarm or asking for a wakeup call. Last night I dialyzed for 7 hours so that I would be up in time to get to the pre-meeting breakfast at 8am. Waking up and then having to get off the machine, decannulate and then stop the bleeding has the same impact as several cups of coffee.

The whole drain line experience does not detract from my commitment to selfdialysis and travel.

The continuing drain line saga

My replacement drain lines never made it on the plane so I am back to my MacGyver-like solution using empty dialysate bags connected via a warmer bag.

Per the request of my blog's number one reader (and proofer) here is a video showing my setup.

Oh crap

I forgot drain lines. You really need drain lines. Windows painted shut. Sigh.

I've called NxStage and will find out later today if I can get drain lines somewhere.

I kept running my supply list through my mind and drain lines just never clicked.

It's the morning now. Last night I drained 6 bags of dialysate, hooked a warmer bag to the now empty bags and then connected the warmer bag to the drain line. I managed to get a 6.5 hour run in, which wasn't totally restful but I am dialyzed. So yes this does work - using empty dialysate bags. At about 3 in the morning I woke up thinking I had to turn down my dialysate to 29 liters to leave room for the fluid I was taking off 1.5 kg/liters.

Rich wrote (I put a call for help out to a couple listservs) that there is a nearby NxStage/Davita unit so I should have drain lines tonight one way or another. This is the same unit I ended up getting heparin through on a previous trip, I wonder if they'll remember me.  I have extra heparin this time so I could trade them for a couple drain lines.

I saved my empty dialysate bags from last night and will use the same technique if I end up not getting any lines. I have a full day of meetings but I'll miss something if I have to run over to a unit.

UPDATE I'm loving the listservs - lots of emails of support and I just got a call from a weKAN member on the NxStage that is coming to DC today for the Friday/Saturday meetings and will bring me the drain lines I need.

The continuing Delta saga

Before my flight yesterday I went back through the Delta voice mail system and was  again told that the charges from the Florida trip would be reversed (for background see here, here, here, here and here). I then went through the even more onerous credit card voice mail system and was eventually told that yes Delta had reversed the charges for the flight home from Florida but the $150 for the flight down was still being put through. Sigh. They will not break me.

Good news, bad news

The Alaska Airlines flight arrived pretty much on time and my six checked pieces came out promptly. The taxi line moved right along and by 10:45 I was in front of the District Hotel on Rhode Island Avenue, a few blocks from Dupont Circle.

The first thing I noticed about the District Hotel after the large "Under New Management" sign are the stairs. Three flights of stairs, and no ramp in evidence. From the curb to the door its a run of five and then three, once through the door it's another five to the lobby level. This was unexpected.

All together I have about 160 pounds of stuff in 5 boxes and a garment bag. With the help of the desk clerk we were able to get the 99 pound cycler up to the lobby level and I made multiple trips to get the rest in the door. I booked this room through hotels.com and it was inexpensive. At least inexpensive for DC. It was in the $160 range while the next least expensive was in the $250 neighborhood. The room reminds me of many a hotel room in Europe when I've been traveling on a budget.

The other issue with the room is that I am on the lobby level of the hotel right as you come in the door. This meant I didn't have to schlep all the gear any farther, but it also means that I will hear the front door traffic all night. And there is a buzzer. The front door is opened from the front desk by means of a loud and obnoxious buzzer. A loud buzzer right outside my door is suboptimal. However, I would not be at all surprised if something were to happen to the buzzer, so it may not be a problem all week.

That's the bad. In the room I found 12 boxes of dialysate. And once I unpacked and plugged in the cycler the System One seemed to work fine, it turned on and the fan is running. That's the good. I'll try not to complain too much as long as the dialysis works.

Smooth Alaska Airlines checkin

I'm at the gate waiting for an on time departure. It took about 30 minutes to go from the curb to this side of security - no charges for the NxStage gear from the nice folk at Alaska Air.

I packed last night while setting up for my treatment which is a good way to avoid forgetting something. I'm only having dialysate delivered in DC so I had to pack cartridges and warmer bags. It was the extra stuff for using the heparin pump that I am most likely to forget. It was while getting myself on that I realized I had not packed a couple items - the 'Y' connector and heparin line (I'm still using up my stockpile of 170 cartridges).

As I sit here at the gate I feel like I remembered everything; it'd be nice to have an uneventful trip.

The Delta saga continues

On my trip to Florida last month Delta Airlines improperly charged me for bringing my NxStage gear (for background see here, here and here). On February 22nd I spent 90 minutes on the phone - mostly on hold - with Delta Airlines; in the end I thought the issue was  resolved. The following week I checked with the credit card company and they did not show the charges being reversed.

I called Delta back on Thursday the 28th getting through to an human after some time on hold - it was about 1:30 here on the west coast. I spoke to the guy and was put on hold and every three minutes he'd come back on the line to assure me he was still checking. At 1:52 he comes back for like the sixth time and says the department I need to talk to closes at 3:50 (on the east coast, i.e. two minutes ago) and I'd need to call back tomorrow.

Worse. Customer service. Ever.

The next day I was too busy to play another round of the Delta game. The credit card company has put a hold on the charges but to follow though on that I'll need to pull together all the paper work, a hassle I wish I could avoid. Delta is trying to wear me down but there is no way I am paying this - particularly after being told the charges would be reversed.

These days there are so many airlines to choose from it is somewhat helpful to have one eliminated permanently from the list of options. I can't see ever flying Delta, with or without the NxStage - no savings would be worth the price.