Any one travel with NXstage???

[mymoonring]

Hello I am going to be new at this Nx stage hem treatment, Me and my family are planing a vacation across the states in a Rv Any one out there ever do the RV with th Nx Kelley

[MJB]

Kelley,

I know that there are promotional videos from NxStage showing a couple who traveled in an RV with the System One. I'm sure if you call NxStage they can give you some support if not a name. I will be leaving in 3.5 weeks on a cruise for 10 days, but thats not much help to you.

Mike

[glitter]

http://ihatedialysis.com/forum/index.php?topic=2797.msg41347#msg41347


If you look in the home dialysis section-I think there are even pictures of Bill Peckham traveling with his NxStage.

[Sluff]

Thanks glitter for helping. You are correct.

[Bill Peckham]

http://video.google.com/videoplay?docid=7425951126784191957
http://video.google.com/videoplay?docid=-1749639265679650272
http://video.google.com/videoplay?docid=-3506414701889948077

The above are to three videos that I have posted on Google that show me dialyzing on the road last summer with the System One.  I drove from Seattle to Chicago and back in a van rather than an RV.  I've traveled three times with the System One, twice by plane. You can read my trip reports on Home Dialysis Central here is the link to the Seattle to Chicago road trip thread: http://forums.homedialysis.org/showthread.php?t=1069

LSB has traveled by RV he posted a report on the Yahoo NxStage user group here: http://health.groups.yahoo.com/group/NxStageUsersGroup/

If you have some questions ask away because I am sure there are others with the same questions.

Billp

[leafsunbear]

I recently traveled with my machine in a RV.  Finding a place to put the machine was the hardest part of it all.  We ended up putting it next to the bed in the back.  Ir didn't fit there real well, but we could bungee cord it in while we were driving and we could handle the small issues to get to travel like this.  We had to remove the heater to put the green lines into it, then put it back on to run.  The cartridge was also pretty tight against the wall which also made hooking the heparin pump line up difficult.  For the most part things were cool.  We stored my bads underneath the RV in the huge storage compartment.  I am not sure but I think we carried seven or ten days worth of fluid at a time.  We had to set up a fluid pick up spot along the way.  Most of the time we were staying in campgrounds with full hook-ups.  35amp electricity is the most common, but 15amp home power works too.  We ran on the generator a few times and that went well.  We even tested fate and used the microwave while on the generator without any trouble.  We had a 29ft RV and it was very nice.  We turned the shower area into our trash can.  We would take empty fluid boxes break them down then stand them up open so we could put a trash bag inside them.  We use those tough no rip trash bags.  They are expensive, but they help with keeping the cartridges from ripping the trash bags.  Most RV campgrounds had big dumpsters we could dump our trash in.  My connection supplies I kept in the closet behind were the machine sat.  I bought rubbermaid containers that were deep and small.  I filled them with everything I would need to connect for however many days I could fit in a box.  The trip went really well as far as the machine working great, generator or regular power,  We had enough supplies for the trip,  we were able to handle the trash really well,  everything worked out great.  I also made sure I planned to do a few extra skip days.  It was good I did, because I had other medical problems that kept me from getting a TX in a few nights.  The thing was that I was prepared for that event.  There was even a skip night that I had planned and it happened just so we could enjoy a night without a TX.  I can't wait to win the lotto.  We will be buying a RV and we will live full time in it.  You can work at campgrounds and live there all year round all over the place.  There are all ready plenty of people that do it.  I think there is even a magazine about it.  That is what I want to be my live.  I don't want to live in a house in a city.  I want to live in a campground below sea level in death valley.  Or at eagle lake, or lassen volcanic park.  or etc.....   Sorry for the tangent.  Traveling with NxStage in a RV is nothing more then doing it at home really. 
LSB

[paris]

Great post!! I am a camper and travelor and you give all us hope that travel can still be done. I hope you win the lotto and can buy your RV!

[mymoonring]

Hey Thanks fo all your replys, I am so looking forward to  going on a trip, I i just finished a 6 year divorce, and in the meantime while that Bull dooody was going on my PKD when full force ahead, But I met a wonderfull man while it was going on. During all the battles i was talked to about Nx stage. This week has been a full week of training to do it at home. And my boyfreing has been doing wonderfull in being my partner. I have felt so good like nothing is wrong with me. Next I am selling my home and we are buying a RV, going to do a cross country Vacation this summer    Will bring the laptop and keep ya all informed..




EDITED:  Fixed  icon - Goofynina/Admin.

[anja]

  Sounds like you had a great trip, leafsunbear!  Sorry about the medical probs, but you seem to have planned ahead well!

Your plans sound wonderful too, mymoonring, enjoy, enjoy~ you deserve it!!!

[Black]

Mike and I spent the second month he was on dialysis in a camper.  We used the same setup as at home except the drain line ran out a window into the drain outside.

We paid extra to get a separate circuit breaker for an extension cord to plug in the System One and the Pure Flow.  That may not have been necessary but the fee was small and that way we didn't have to worry about using the hot water heater or the microwave during dialysis.

The hardest thing was moving the machine off the floor and onto the Pure Flow.

We took some supplies with us from home and scheduled delivery of additional supplies from NxStage -- they arrived on time and the quantities were correct.

[Bill Peckham]

I have a 36' Grand Banks (Crail http://www.yachtshare.com/cgi-bin/displayacharterboatsmall?bid=92 ) chartered for the end of July, first 10 days of August.

I use to be in the yacht brokerage/charter business but with dialysis I put cruising out of my mind. It's been 16 years but hopefully it'll come back like riding a bike. With the System One I should be able to dialyze at the dock or anchored out. The Crail is a lot like the 34' CHB "Eagles Nest" that I use to charter - it was a single screw with a bow thruster too.

The plan is to start in Anacortes, WA with three or four days worth of supplies and use Orcas Island's Rosario Resort marina as a resupply base. My sister in law and niece will start the trip with me and then leave to be replaced by my Mom and a couple of her friends. They can take the ferry to Orcas Island to meet the boat during resupply. After resupply I can head out to the other San Juan Islands or even up to Canada and their Southern Gulf Islands. I beseech the weather gods for fine, sunny days with only a light breeze. It should be a great trip, hopefully without any Gillagan's Island sort of misadventures.

[Black]

Bill, that sounds wonderful.  I wish you fair skies and gentle breezes.  Let us know how it goes.

[Black]

I have a 36' Grand Banks (Crail http://www.yachtshare.com/cgi-bin/displayacharterboatsmall?bid=92 ) chartered for the end of July, first 10 days of August. ...

Is the trip still on?

[sueq123]

Which cruise line did you use and when? We booked a cruise with Princess and they are giving us trouble about bringing Nxstage with us--iin fact they said we can not go.  Any help would be great

[stefi]

 What about hotel stays? I heard the company will deliver supplies to you in a hotel-- is this true? will they deliver to a nearby dialysis clinic?

[Bill Peckham]

Black, here is a link to photos of my adventure on the Grand Banks.  http://flickr.com/photos/53469571@N00/ I dialyzed at the dock and anchored out - in the US and Canada.  Here is a link to a brief video that I shot and posted to Google http://video.google.com/videoplay?docid=3209393752569749330
For some reason I say the boat is a Tully Craft - it's a Grand Banks.

Here is a link to a thread at HDC that I posted during the trip http://forums.homedialysis.org/showthread.php?t=1550

The trip went well until the 9th day when the engine blew a gasket - not good. I have a five day make up charter booked for Memorial Day weekend 2008.

[Bill Peckham]

Which cruise line did you use and when? We booked a cruise with Princess and they are giving us trouble about bringing Nxstage with us--iin fact they said we can not go.  Any help would be great

No cruise line for me this trip - sorry to hear you're having trouble with Princess. I've heard that people have done cruises successfully using the System One - I think Holland America is supportive. I seem to recall hearing that NxStage has talked to a cruise line explaining the technology - maybe they'd be able to help you pioneer NxStage on Princess. There isn't a good reason for them to deny passage so if you're persistent you may be able to bring them around. Would they deny a PD dialyzor? I doubt it - why deny someone on the System One?

One thing that works against using the System One is the lack of tech support on the ship. I think there is enough people on the NxStage that we should be able to put a NxStage cruise together. That way we could back each other up - if your machine went down you could use mine and vis a versa. Or NxStage could supply a back up or two.

[Wattle]

Black, here is a link to photos of my adventure on the Grand Banks.  http://flickr.com/photos/53469571@N00/ I dialyzed at the dock and anchored out - in the US and Canada.  Here is a link to a brief video that I shot and posted to Google http://video.google.com/videoplay?docid=3209393752569749330
For some reason I say the boat is a Tully Craft - it's a Grand Banks.

Here is a link to a thread at HDC that I posted during the trip http://forums.homedialysis.org/showthread.php?t=1550

The trip went well until the 9th day when the engine blew a gasket - not good. I have a five day make up charter booked for Memorial Day weekend 2008.

You are an inspiration. What an amazing trip.   

Just one question. How did you manage all your supplies? Did you take it all along or pick up along the way?

[Bill Peckham]

Just one question. How did you manage all your supplies? Did you take it all along or pick up along the way?

I put one treatment worth of supplies in a plastic tub - so I had 9 plastic tubs. Each tub had 25L of dialysate, 1L of saline, needles, syringes, blue drip pad, alcowipes, iodine wipe, garbage bag - everything I need for a single treatment. I started the trip with 5 tubs and then after 6 days some friends came up bringing 4 tubs - my resupply.

Each tub weighed about 60 pounds. I found that by having one treatment/one tub it was an easy way to stay organized. I returned home with three tubs which I have left as storage - so that if I suddenly wanted to go somewhere I could just load the tubs and the cycler in a car and go.  I'll rotate the tub supplies every 6 months or so.

[Zach]

Black, here is a link to photos of my adventure on the Grand Banks.  http://flickr.com/photos/53469571@N00/ I dialyzed at the dock and anchored out - in the US and Canada.  Here is a link to a brief video that I shot and posted to Google http://video.google.com/videoplay?docid=3209393752569749330
For some reason I say the boat is a Tully Craft - it's a Grand Banks.

Here is a link to a thread at HDC that I posted during the trip http://forums.homedialysis.org/showthread.php?t=1550

Outstanding!
 

[kidney4traci]

Bill, I like your idea of putting all items needed per day into one tub.  I am traveling again and think I will do it that way too.  Also like the idea of having a few extra "days" packed up for quick travel.  Thanks!!

[Black]

Black, here is a link to photos of my adventure on the Grand Banks.  http://flickr.com/photos/53469571@N00/ I dialyzed at the dock and anchored out - in the US and Canada.  Here is a link to a brief video that I shot and posted to Google http://video.google.com/videoplay?docid=3209393752569749330
For some reason I say the boat is a Tully Craft - it's a Grand Banks.

Here is a link to a thread at HDC that I posted during the trip http://forums.homedialysis.org/showthread.php?t=1550

The trip went well until the 9th day when the engine blew a gasket - not good. I have a five day make up charter booked for Memorial Day weekend 2008.

Thanks, Bill, great job on the photos and video.  I was especially interested in the ones of your set-up, but the rest were beautiful and interesting. 

Looks like everyone had a good time.  Sorry Gilligan didn't get to go.  Where did he stay?  I board and groom dogs so I always wonder about everyone's arrangements.    The blown gasket was a catasptrophy (hope you weren't adrift at sea    ) but at least you will get another trip out of the deal.

BTW, 21 countries has to be a world record.     Have you contacted Guinness?

[goofynina]

Now THAT my friends is being organized   AWESOME IDEA BILL 

[Meinuk]

Bill, amazing photos.  You are an inspiration.  (Are you getting sick of hearing that??)  I actually use you as an example when I speak with my family about me doing home dialysis (I live alone). When they were here in early August, I actually told them that you dialize alone and currently you are cruising off the coast of Washington and dializing.  I then showed the buttonhole video.  Thanks for being a trailblazer - I am glad to follow, but my ambition is a Hinckley SW 42 off the coast of Maine.

so, THANK YOU!

[Bill Peckham]

You are an inspiration.  (Are you getting sick of hearing that??) 

I appreciate it Meinuk but I have to say that lately I feel overwhelmed and not at all up to the challenge.  Travel is easy, it's the day to day that is kicking my butt.