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Author Topic: Key West Trip - Home-Hemo NxStage  (Read 1632 times)
SuperHuman
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« on: August 06, 2017, 09:50:09 PM »

This is my experience traveling with the Nxstage system one machine, to Key West, Florida.
The very first, and maybe the last (I don't know) that I will travel with a machine again. I don't really want to say this was a bad experience. I also don't want to say it was smooth sailing either. I actually tried to put a documentary together to show people, how easy or how difficult this would be. Wouldn't you know, the same people that gave me problems with the dialysis machine and travel, also wouldn't speak on camera or take any type of interviews! (All working for the airlines).

So let me say first of all, My girlfriend lived in Michigan, and I was living in Ohio at the time. The first step to our planning was getting me and my machine to Michigan, because that's where we were leaving from to hit the airport. So Nxstage actually gave me a brand new travel case, so that was a plus. It was a hard case too, (not the soft one) which was nice. (It was still large, heavy, and don't forget all the other things you need! Only the machine fits in the case!). So I lugged this 80lb machine down three flights of stairs from my apartment. (not as bad as it sounds) but for someone that may not be as physically healthy, I wouldn't recommend trying this! So I got this machine and all the other parts into my 1988 Pontiac Fiero Formula, (Yes i know, could I own any smaller of a car you're probably be saying!? lol... ) Well, I never planned putting a dialysis machine inside my Fiero, (Ever) but I did take out the front seat, (mind you there is only two seats lol), ..and well there was plenty of room then! (btw my girlfriend hated that car because of the size and only two seats, and of course I no longer own that sweet 88' Fiero I once loved lol) But it was fun while it lasted,..
So now back to taking off in this Fiero with a dialysis machine from Ohio, to Michigan!,.. the trip to my girlfriends house was about four hours from Ohio, (so this was going to be one long day!) ..and that drive (usually congested) ..went pretty good, no problems thank God.
When I got there we were rushing to exchange cars, and all my "dialysis baggage" to her vehicle, our regular baggage, and we took off to the airport!

Now things really get difficult,... (and I'm so glad I prepared for these airlines employees!) So wheeling this dialysis machine around, was a breeze with the hard case and wheels the nxstage company gave me,.. couldn't complain there one bit! I mean it's much bigger than your suitcase, but it moved around just fine. So checking this thing in now,.. well with security beefed up even a few years ago, they were testing my water bottles (that I was allowed to bring weather they wanted me to or not,  because of medical reasons, though they sure wanted to check those water bottles, and took lots of time doing so!),..when that was finished, checking in the machine time, the most fun! At least three airline employees told me I could not check my dialysis machine as medical equipment,.. so of course I had to ask for someone who actually knew what they were doing. I had already prepared you see, so they really couldn't tell me anything I didn't already know myself about the laws and my rights, and I brought plenty of legal document proof with me. (don't ever forget your paperwork!) If anything, never trust people to know what they are  actually doing, especially if it has to do with laws and dialysis!! So after waiting about thirty minutes for someone higher up I could speak with, I again taught her the laws and my rights of this medical equipment and how they are supposed to check-in my machine without hassle, without damage, and without problems.... (you think these airline employees would deal with this situation every day, or week, or at least a month! being how many people are on dialysis, and home hemo with nxstage, but maybe they don't travel often?). 
It felt like they almost just didn't want to check my machine in, but finally after explaining to several people how this all works, they finally checked it in!
Whooo yea! Glad to get rid of that thing,.. now I can feel a little bit normal person again, (for a short time  anyways)
Not having to carry that thing around is so nice, especially when your girlfriend has three suitcases of her own, and then my one suitcase,... lol

Everything from then on, went great...(because I wasn't carrying any dialysis equipment!) ..so now, until the next plane ride here we go again! Pretty much the exact same thing happened all over again,.. and I had to get a manager, and explain it all la la la.... I was just like, whatever by this time, I didn't really care what they were saying,.. I was just like find someone who knows what they are doing, and get them up here. So dealing with that again was just a blast,.. let me tell ya,.. couldn't wait to get on the next plane and get all this stuff over with once again,.. so off we go to Key West now,.. "incredible place as we flew in over the keys",... finally we land, and it's a really small airport, as our plane was much smaller than the previous plane. Now, the last complication and dealing with this dialysis machine... I needed to find some sort of shuttle bus, or van pickup that could carry something like a dialysis machine,.. asking one of the employees was very helpful at this stop, and she just told us to call one of these numbers and ask them. So we did, they arrived in about fifteen minutes, dropped us off right at our hotel, and because this was a hotel with only one floor,.. it was a breeze just walking up to our door, and wheeling in the machine,... and what do you know, my dialysis supplies have already arrived as I open the door to the hotel! (I can't say one bad thing about Nxstage, from helping with the carrying case, to getting the supplies to my hotel even before I arrived, everything they did was 100%, unless I want to complain about the size of the machine! Yes that could be a little smaller!)  ;D

So now it was time for vacation! It was sort of weird bringing this machine with me on vacation, because it's the very first time, and only time I ever did dialysis on vacation, or when going somewhere for several days at a time. Any other time the way I would travel, is just not do dialysis and alter my diet to a more extreme measure than it already is. But my girlfriend talked me into bringing this thing, and she wanted me not to have to worry about eating or fluid gains...and just enjoy myself,... (but easy for her to say, she wasn't dragging this thing around, and putting herself on dialysis!) so I said OK, I'll try it this once...  :P

Now doing dialysis treatment was sort of strange too, because I didn't bring my pole where all dialysate bags hang from.. At the time when I was back at home grabbing all this extra stuff loading my car, I just felt like well I'll just figure out something when I get there, I can make something when I get there they can hang from,..no big deal,....until you actually are ready to setup treatment! lol... I can remember saying to myself, hmm well, what am I going to do for this small problem...(of course my girlfriend was not happy I didn't bring the pole) So just thinking about it for a few minutes, I took some hooks and wire hangers, and made some structure so the bags could hang from,..it worked out fine, and did the job..that's all that mattered to me.
So the next obstacle was laying in bed, cannulating myself, was a little odd too, because I was only used to doing this in a chair, not laying down and back in a bed sticking needles in my arm, plus it was hard reaching the machine. (something else I didn't think about) But after I got myself on, and started treatment, it was finally nice to lay back and get some rest in a bed! Of course I fell asleep, I always would fall asleep on home dialysis, and then the beeps and bells would wake me at the end of treatment,... Nothing worse then having to get up from sleeping, and take yourself off a dialysis machine! Ugh! It really is the worst feeling, you are so tired, you just want to fall back asleep,..not deal with all this now! I really hated that about home dialysis...yes it's nice to sleep when on dialysis, but not taking yourself off home hemo!
Though the same thing happens at a unit, (cause I usually try to sleep there too), but for some reason it's just not as bad, probably cause you never really fall into that deep sleep with all the bell noises and blood pressure cuff going off all the time,.. but knowing someone is there, and there is a patient coming in waiting for you to finish also sort of gets you moving quicker than if your at home, wishing you could just fall back to sleep!

Well like I said, I can't complain too much about the trip with the machine, because I'm sure different people with different airlines may have a better experience. But for me, I don't think it's just for me. I rather just modify my diet like I have been for 20 years when I go somewhere, as well as fluid gains and enjoy my freedom this way on a vacation, rather than dealing with all that mess!
But, that's not for everyone either of course. Most people like to eat, enjoy eating, enjoy going out to eat, and having drinks,.. so If you enjoy eating, (and drinking) well then that would be impossible for you. I was more into the physical activities in Key West like swimming, snorkeling, paragliding, jet skiing, etc.. and I don't really care about eating, it's more of a necessity for me now living on dialysis, I don't even look at food the same way as a normal person would. I break everything down into nutrients, chemicals, additives, and vitamins and that's how I look at food the majority of the time.

Fluids, are probably harder than anything, because when it's hot, your thirsty, and there is a constant balance going on there, because if you sweat too much doing activities, then you don't want to dehydrate yourself, but at the same time you don't want to end up drinking too much because your so thristy from activites,...and carry to much fluid, because you can feel the extra weight and if it's too much extra weight, well you just start feeling like crap and can't enjoy yourself anyhow.
But it's very manageable, with much discipline if you want to do it.

So would I ever do this again now that I'm actually thinking back on that trip,.. it's very hard to say,.. probably not. But I also don't want to discourage anyone by reading this, to at least try it once if you are on home hemo nxstage,.. you may have a better experience, or maybe ignorant airlines that don't know the laws of the United States won't bother you as much, but those sorts of things bother me, and I just don't like dealing with them. I feel like I'm always fighting someone about my disability, and it gets old very fast after all these years. So try it once if you are on the same treatment and thinking about a vacation, and if you have the same experience, well we always have centers to go to if needed, or emergency rooms, if it comes to that! It's not like we are stranded on a deserted island, and there is no hope. As long as you're still in the United States, you should be fine finding a hospital or center you can go too, though if you do go to a center, remember you are responsible for what medicare doesn't pay for each treatment, which can also get costly!

I just wish traveling was a little easier for dialysis patients, but I'm sure it will be one day. But by then we should be walking around with artificial kidneys... and we can bypass all those hassles when traveling...  ;)
« Last Edit: August 06, 2017, 11:06:22 PM by SuperHuman » Logged

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Simon Dog
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« Reply #1 on: August 06, 2017, 10:23:51 PM »

Did NxStage loan you a case or did you buy one?   It was good to hear the case has wheels - I didn't think it did.

If you are on Medicare, there is not that much different in-center or home: the billed amount and patient responsibility, if any, is the same.  The unpaid amount is about $60 per treatment.

I travel at least 4 times a year and just book in-center appointments.  I find it easier than hauling a machine around and, when I am with my wife, she does not want to be burdened sitting with me in a hotel room whiling away the time while I dialyze.
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SuperHuman
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Hello, nice to meet you!

« Reply #2 on: August 06, 2017, 10:52:19 PM »

Nxstage gave me the case (purchased it for me). Maybe because of all the problems I had with deliveries while doing home-hemo, or maybe because I was public speaking for them at the time to new patients, I don't really know why they did that, but it was nice of them.
It's a much better case from what the dialysis center had we could of borrowed,... those were soft cases, and didn't look very easy to get around, or sturdy.

Yep, the hard case had wheels, and was overall a very strong case. No problems or issues with the case. (just know that all you can fit inside this case is the actual machine itself, no side warmer, no poles, no dialysis holder, all that stuff has to come off).

Yea I know about the extra cost, but I'll most likely never go to a center while on vacation (unless it was more than 7 days total maybe). The only time I would ever probably consider dialysis on a trip again is on a cruise, because it's already there and ready for you to go. Nothing to worry about, just go to your scheduled dialysis treatment on the boat.

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cassandra
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« Reply #3 on: August 07, 2017, 01:36:30 AM »

I'm sorry you had such a hassle on your trip SuperHuman, I learned from our first trip which went not much differently. Although we did bring the pole  ;D. But our hard case had no wheels. So we bought a trolley, which made it bearable. I don't like going by plane either cos staff can be really strange. We had a customs officer who refused to help Hubby putting the machine on the belt because it was heavier than 20 kilos, so union regulations.... Bla blah.
So now we take the ferry to Portugal, The Netherlands etc. Put everything in the car, drive on the ferry etc.

When I'm on the machine Hubby explores the surroundings or meets up with friends or both.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Simon Dog
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« Reply #4 on: August 07, 2017, 08:33:30 AM »

Quote
The only time I would ever probably consider dialysis on a trip again is on a cruise, because it's already there and ready for you to go. Nothing to worry about, just go to your scheduled dialysis treatment on the boat.
Some catches:

1. Your traveling party has to buy  the cruise from the Dialysis at Sea company at rack rate, not the super discounts you can sometimes score on cruises when buying directly.

2.  Dialysis at Sea does not accept any insurance.  Expect to pay $600+ per treatment.  Even if you are on Medicare, you do not get the "Medicare rate" since they are not a "Medicare provider".    Any insurance reimbursement is after the fact based on paperwork you are given after you pay in advance for the at sea treatments.
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SuperHuman
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Hello, nice to meet you!

« Reply #5 on: August 07, 2017, 10:20:37 AM »

Quote
The only time I would ever probably consider dialysis on a trip again is on a cruise, because it's already there and ready for you to go. Nothing to worry about, just go to your scheduled dialysis treatment on the boat.
Some catches:

1. Your traveling party has to buy  the cruise from the Dialysis at Sea company at rack rate, not the super discounts you can sometimes score on cruises when buying directly.

2.  Dialysis at Sea does not accept any insurance.  Expect to pay $600+ per treatment.  Even if you are on Medicare, you do not get the "Medicare rate" since they are not a "Medicare provider".    Any insurance reimbursement is after the fact based on paperwork you are given after you pay in advance for the at sea treatments.

Yep I'm aware, but if it was like a 14 day cruise, it's still a nice option that's there for patients if they want to take advantage of that route, instead of lugging equipment around.
« Last Edit: August 07, 2017, 10:27:38 AM by SuperHuman » Logged

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Vt Big Rig
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« Reply #6 on: November 20, 2017, 08:32:02 AM »

I would encourage folks on NxStage to travel. We do it often. We have a soft case. It has wheels but it could not go on the plane. I understand the hard ones are very expensive. We use the pole on the machine and have had bags delivered ahead of us. I would be more scared of the airline losing my " luggage"!
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
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