Ideas? - Shipping NxStage dialysate to HI

Discussions for Patients, Family, and Friends HD For Patients
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Hello y’all. I haven’t been active here for awhile due some fairly serious health problems that landed me in the hospital for about 6 months. Seems like I’ve FINALLY recuperated. It was long and frustrating getting through this one, but I am back. At least for a while - I hope. Yeah!

I have a problem that I am hoping I can get some creative ideas from y’all to help me solve. First, unfortunately, I want to let it be known that I am one of the several PHD users that recently got burned by Aksys. Since they have decided to focus most of their resources on developing thier next generation PHD, they have pulled out of my area - I think they even pulled out of Texas entirely. I am not positive about that last statement, but I am pretty sure they did. Alas, I have decided to use the NxStage System One to continue doing my hemodialysis at home. After dialyzing at home for over a year now, they’d probably have to drag me, kicking and screaming, back to regular in-center txs.

I am currently in training on the System One, which should end this week. As of Saturday, I am planning on being a full-fledged “NxPat” (NxStage Patient - what do you think?).

Airline Travel with the System One:

As luck would have it, I am going to Kauai, HI for a well needed 2 week vacation from my “real” life here in Houston, TX (or, as I call it - Hellhole, Tx). Once I switched to the System One, I immediately thought: “Hey, I can dialyze with my NxStage machine in Kauai and not have to go in-center!” Wrong.

I’ve recently spent a lot of time reading all of the other travel stories on this forum (car, airline, cruise). There are two things that I found out that didn’t make me very excited about my trip: NxStage doesn’t ship “travel” dialysate to Hawaii, and airline travel with the System One is possible - but it’s a pretty big hassle.

I can deal with the fact that travelling with the System One is a hassle, but I can’t seem to get over the other problem - the fact that NxStage won’t ship dialysate to the Hawaiin islands (they are not part of the 48 contiguous US states). Now, that’s a really big problem for me, because I am going for a 2 week stay. How many lbs and boxes of dialysate would be needed for a full, 2-week vacation, you ask?

I would need to do 13 treatments while I am on my vacation. 13 treatments would require 13 boxes, each containing 20 liters of dialysate - which would total 572 pounds! I seriously doubt that Continental (the carrier we are flying on), would allow 13 boxes, each weighing 44lbs, and my System One, weighing around 100lbs in its travel case, to be checked as extra baggage at no charge (due to the disability regulations). I haven’t checked yet to be positive about that, but I really doubt they would allow it.

So I need to figure out a way to get all of that dialysate over to Kauai. I’ve been on vacation there before and had to dialyze in-center. It took half of my time away! I really, really want to be able to bring my System One with me this time, and dialyze in the comfort of the gorgeous house we rented.

I haven’t even tried to compare prices for shipping that much stuff over. I’m scared of what the cost is gonna be! I’m really hoping that someone can throw me an idea of a really cheap way for me to get all of that dialysate over to Kauai.

Anyone? Anyone?

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You can plan on time, have your dialysate shipped to where you will be…be sure someone will be there to recieve the packages…once all is there all you do is fly to Hawaii with your NxStage System One… :)v …I know I know, you will have to ship them yourself…just tell NxStage how much extra you need for your trip…

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What he is saying is that NxStage will not ship the dialysate to Hawaii nor will they ship to Alaska. That is what I was told as well.

To the original poster:

I wonder if you can get a PureFlow (dialysate maker) shipped over there it would be much, much cheaper. How about contacting NxStage and ask them your options. Call them at 866-697-8243

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What he is saying is that NxStage will not ship the dialysate to Hawaii nor will they ship to Alaska. That is what I was told as well.

To the original poster:

I wonder if you can get a PureFlow (dialysate maker) shipped over there it would be much, much cheaper. How about contacting NxStage and ask them your options. Call them at 866-697-8243[/quote]

Exactly, that’s why he/she needs to ship them on your own budget…that’s how I was told how to get bagged dialysate into Mexico…good news is that dialysate bags are beeing exported from Mexico now! :smiley: That means there’s pharmacy companies producing NxStage’s bagged dialysate in mexico…

Speaking about Hawaii…that’ quite far and for two weeks vacationing sounds like 32-48 bags are needed…that’s quite alot of boxes…but if you can ship them on your own behalf that would work to.

On the other hand, the PureFlow sounds like a plan to but the water over there needs to be tested…you can’t just use the PureFlow anywhere, it needs to meet the right water standards…

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I would ask NxStage’s customer service personnel if they can help you find out what your lowest cost options are for shipping your solution to Hawaii and how log it will take for delivery. I suspect since you’ll neeed 500 pounds of solution for the 2 weeks you’ll be in Hawaii, sending the solution as freight would be cheaper than paying the weight charges for taking the solution on your plane as extra baggage. You might want to Google freight & U.S. to Hawaii to find what companies do this, including FedEx Freight.

There was a recent Topic of the Month on air travel with the NxStage that you can find at:
http://www.homedialysis.org/v1/rotating/0606topicofthemonth.shtml

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I already thought about trying to get a PureFlow device and have it shipped over there. You are right, epoman, in that it seems it would make things a whole lot easier if I could get one of those. I asked my clinic about the possibility of my doing that. Unfortunately, since the PureFlow device hasn’t made its way over to my part of the country yet, they said it wouldn’t be possible. Their reason was that no one has been trained on it yet. so NxStage wouldn’t alow them to get one until it is “officially” rolled out down here. I don’t know if that is really true or not. I’ll find out for sure.

Plus, I didn’t think about the water quality issues that Gus brought up.

I am planning on callling NxStage in just a little while here. I am going to ask them about both the possibility of getting/using a PureFlow device for HI and also if they can help me out with finding a “reasonable” way (cost-wise) to ship the 500 lbs of dialysate over there.

Another thing I need to ask them about is technical support. I am not sure if they will do a 24-hour replacement, like they do on the mainland, if a mechanical problem happens to my machine and I can’t use it.

When I find out any information about this, either good or bad, I’ll let y’all know.

Thanks for the input so far!

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Eston wrote:

Aksys just yanked my PHD - Bertha is dead!)

Regarding this situation of Aksys giving lots of their home patients the heave ho, I would of been so upset if that was my loved one and family who had trusted this company, went through training and all the many adjustments only to have the company pull out on us. Did this come as a total surprise/shock or were you told up front that this might happen someday?

Re: shipping of monthly supplies or shipping to a vacation destination if the vacation is long, that sounds like a very high expense. Will be interested to hear what the costs are and how home programs afford this expense.

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Uh the “heave ho”? That is a poor choice of words. The decisions Aksys has had to make lately must have been/are very painful for everyone involved. I am sure that the hardest decision they had to make is which dialyzors would no longer have access to the PHD but there were many hard decisions made lately. Decisions that had to be made. Many people who worked for Aksys have lost their jobs. People who gave their time and treasure have lost both.

As has been posted again and again these new machines – the PHD and the System One -rely on novel technologies and are entrepreneurial businesses pioneering new markets. It is, in my opinion, naive to think that FDA approval means that the business will be around forever or that there will never be clinical complications from the modality. Those who use(d) these new machines should be proud that they’ve moved the ball forward but you’re kidding yourself if you think this is a static situation.

Speaking for myself it is a worry that the PHD may not be available in a year, I like the PHD, I hope that I will be allowed to continue to use the current PHD right up until I switch to an improved model someday. But if I can’t continue to use the PHD then I will make due with the next best option. As the companies come and go - merge and release new products - I will continue to choose my best treatment option from the choices I have available.

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Eston I know how disappointing it must be to have to change your machine choice on top of the other challenges you’ve had lately. The NxStage is a good option. Do you have other high dose dialysis options? NxStage comes at the job of dialysis from a different angle then either a standard machine or the PHD.

On a standard machine, at an 800 dialysate flow rate your blood is cleaned with about 50 liters of dialysate an hour, while on the System One your blood is cleaned with between 6 and 12 liters of dialysate an hour. What the System One looses in quantity it tries to make up with quality. The low dialysate flow rates allows allow the System One to get the most dialysis out of an unit (eg. a liter, mililiter) of dialysate.

In the past I have always thought that the key is to maximize the amount of dialysis per minute but the NxStage instead looks to maximize the amount of dialysis per a unit of dialysate. In a way it is the same thing but there is a subtle difference. Looking at the PHD through the NxStage lens you were using 50 liters of dialysate and maximizing the impact of the dialysate by reusing the 50 liters of dialysate by running it through the artificial kidney repeatedly.

Looking at a standard machine through the NxStage lens the standard machines use much more dialysate than either the System One or the PHD but a standard machine uses each unit of dialysate less efficiently. So you could say that a standard machine is making up for lower quality through quantity.

Eston if I was making the switch I would look to maximize the amount of dialysis per unit of dialysate and to use as much dialysate as I could. According to the “NxStage Cartridge Instructions for Use” you get a big jump in efficiency if you have a 200 Qd as opposed to a 100 Qd. I think the way to get the highest efficiency on the NxStage would be to have FF=40 and Qb=500 which should give you a Qd of 200.

As far as traveling outside of NxStage’s supply area I have been thinking about a bare bones yacht charter in the Caribbean. I could leave from Florida and have supplies sent (on my own dime) to one or two resupply stops but the thing I am not sure of is: what if I need to swap out the machine? I was thinking that I would need to make arrangements for having the replacement System One reshipped just in case.

In your situation this might be an instance when travel insurance would be a good idea.Sending a PureFlow also sounds like a good idea - more dialysis less weight.

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Bill wrote:

According to the “NxStage Cartridge Instructions for Use” you get a big jump in efficiency if you have a 200 Qd as opposed to a 100 Qd. I think the way to get the highest efficiency on the NxStage would be to have FF=40 and Qb=500 which should give you a Qd of 200.

Didn’t you say in another thread that it is unwise to run a high blood pump speed?

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I think I said that I lowered my Qd in the mid90s because I was worried about the negative cardiac and fistula impact. I then wrote that I could not find articles to support those concerns, they may be out there but all I found was articles about high ultra filtration goals and/or rates. Anyone find anything?

I would be interested in trying a higher filtration factor (or fraction?) on the NxStage – I think with the pure flow you could try using 50 liters of dialysate per treatment at an FF of 75 with a Qd of 400 which would give you an aprox 3 hour run.

Even if you could get to an FF of 50 you could get a Qd of 200 at a Qb of 400…

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Eston if I was making the switch I would look to maximize the amount of dialysis per unit of dialysate and to use as much dialysate as I could. According to the “NxStage Cartridge Instructions for Use” you get a big jump in efficiency if you have a 200 Qd as opposed to a 100 Qd. I think the way to get the highest efficiency on the NxStage would be to have FF=40 and Qb=500 which should give you a Qd of 200.

Bill -

I guess I need a little bit of help with your calculations. “Qd”, “Qb”?? I know that I should already know this - but could you please give me a quick definition of these "symbols’?

Also, what other high dose machines are even out there for me to choose from?

(BTW: FF = “Filtration Factor”)

My clinic has chosen to go with the recommended FF of 30, when someone first starts using the System One. I a planning on increasing in a little bit (up to 35) and have a clearance drawn so that I can compare my clearance between using an FF of 30 and an FF of 35. Based on the result of the comparison, I’ll just keep working with it to get the best clearance that I can.

Why did you suggest travel insurance for my trip to HI, Bill?

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I don’t know about a blood flow rate of 500, Bill. Dr. Twardowski has written at least one paper (which I don’t happen to have handy, since I’m still at home) and did a presentation at the Annual Dialysis Conference last year stating that higher blood pump speeds are harder on the access. He believes that this is why fistulas have been so much more successful in Japan and Europe–they just weren’t meant to have such high blood flow through them. So, it’s always a trade-off.

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Howdy, as far as the original topic of shipping dialysate to Hawaii. You may wish to Google “freight brokers” booking through the actual freight companies generally cost more as they generally quote the highest rate to folks who do not ship on a regular basis. Brokers will be able to tell you about the options available and their pricing schedules. Shop around. You may be able to find a pretty good deal. One thing you may want to keep in mind, a pallet of boxes is generally easier and therefore cheaper to ship than a bunch of boxes. If you have the resources to deliver them yourself to the terminal(or have them picked up by the freight company) they may palletize the shipment for a nominal fee.

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I found a great option, but my Program Director balked at the idea. Is her “balking” valid?

The great people at NxStage gave me what I believe to be the perfect solution. They graciously offered to ship my entire vacation supply over to HI for me, even though they are no authorized to ship there. To make the shipment, what they would do for me is to pro-rate the total cost of shipment from the mainland to HI and simply charge me that amount - only the part of the shipping costs it took to ship mt needed supplies from the mainland to HI.

It would only wind up costing me $800 and I could get it there is just a few days. Sounds great to me. The caveat is that NxStage can not bill me directly - they will have to bill my center for the $800 I would need to pay. The center can then just bill me for the $800 shipping charge they would get from NxStage. Everyone would get their money and be happy, right?

What my director balked at was the idea of their turning around and billing me for the $800 shipping fee. I am on a Medicare II payment plan (which is a monthly composite payment from Medicare), and she said that she had never heard of a clinic charging a patient for something “special” like this.

What she told me was that it would look like they were “bribing” me to stay at their clinic by paying for the $800 fee!

Does this sound right to anyone? It really doesn’t sound correct to me, however, I think that it does fall somewhere within the Medicare II composite rate billing rules. I do not know the details of these rules, so I couldn’t say whether or not what she told me was correct.

What would be so wrong with the clinic occurring an extra $800 charge from NxStage and earmarking that charge to be billed back to me? I am more than willing to pay it.

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Method I patients do all their business with the dialysis clinic. The bills include the dialysis equipment, supplies and staff support under the composite rate.

If you are a Method II patient, your dialysis clinic should only be billing Medicare for support services – the allowed charge for the nurse, social worker, and dietitian. The Method II supply company (which is supposed to be separate from your clinic as far as I know) should be billing Medicare for the dialysis equipment and supplies.

When you get Medicare explanations of benefits showing what it has paid, who does it show for your dialysis charges?

I suspect the clinic is worried about a ruling from the Office of the Inspector General that stated that dialysis providers could not give patients anything of any value greater than $10 one time or $50 in a year or it could be interpreted as an “inducement” to the patient to get his/her treatment from a particular clinic.

The question is whether your clinic (Method I) or supply company (Method II) can legally bill you for the shipment of supplies to your travel destination. If not, the next question would be whether the clinic’s (Method I) or supply company’s (Method II) payment of shipping costs would be merely a cost supplying a home dialysis patient who travels vs. inducement.

These would probably be questions to ask Medicare. Ask your clinic or supply company if you or they can call to find out. I wouldn’t expect 1-800-MEDICARE to be able to answer to this question. However, they may know the number to call to talk with someone about Method I or Method II claims for patients at your clinic.

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Beth -

I was confused. I am definitely a Method I patient. I don’t know why I thought that Method II meant that I pay the clinic for everything. I am definitely Method I - the clinic pays for everything and I receive a monthly bill from the clinic only.

I will give the 800 MEDICARE number a try and see if they can refer me to someone else that can answer my question.

Thanks.

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If they can’t bill you $800.00 can you donate the money?