I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: gothiclovemonkey on June 10, 2014, 01:18:01 PM
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we are wanting to go t the meetup in vegas this year, and good lord, i looked up the cost of flying and im thinking driving will be our only option...which is ugh
does anyone know, is it easy to do home hemo whilest traveling? ill be starting my training soon, i believe she said its nexstage machine...
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I have not yet traveled with my NxStage, but I know the deal:
1. Machine weight 74 lbs. There is a soft case ($300) and hard case ($800) available from NxStage, though some centers can loan them. The machine with the hard case weighs 99lbs to meet the airline 100lb limit. Airlines have to let dialysis machines fly for free, and are liable for the full original cost regardless (or is it irregardless?) of normal liability limits.
2. You will need to use bags when traveling. These can be pre-shipped to your destination. Ditto for your saline. Las Vegas hotels are notorious for their "package receiving fee" (they charge by package count and weight). Call the hotel and speak to the manager and asked to have these charges waived. I had good luck with this when I was on PD. You still need to plan on tipping the bellhop to get them to your room.
3. Even as a home hemo patient, you have the option of going in-center when you travel if that is easier for you, or if you are traveling without a care partner. If you book as a visiting patient and use buttonholes, bring your own needles - not all centers stock the blunts and, if they do, it may be a different brand from the ones you are used to. (been there, done that)
4. You will need to take all your little stuff (syringes, needles, gauze, etc.)
5. If you book as a visitor in another clinic, know your Rx - particularly which bath you are on; filter; the bicarb and saline settings; and if you get any drugs (EPO, Zemplar, heparin, etc.) during treatment. It is the exception, rather than the rule, for me to not find some sort of error when in another clinic.
Above all, don't get discouraged and don't let D prevent you from traveling. Congratulations on the move to home hemo - I hope your experience with it is as good as mine.
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We traveled with our machine often. If traveling by car, you don't really need a case. It IS heavy, but would fit in the trunk. I kept a list of all the supplies that had to go, too, because there were times we got where we were going and didn't have something. The check list really helped.
Aleta
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Agree, you won't need a case if you drive, but you will need the hard case if you fly. The main issue is the weight of the machine, but we have travelled multiple times with ours.
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When we go to Holland (by car, and ferry) We take everything in the car with us, including bags if its a short stay. One session half an hour before we leave, and a session with bags an hour after coming back. Its absolutely brilliant (...)
Good luck, and love, Cas
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we are wanting to go t the meetup in vegas this year, and good lord, i looked up the cost of flying and im thinking driving will be our only option...which is ugh
does anyone know, is it easy to do home hemo whilest traveling? ill be starting my training soon, i believe she said its nexstage machine...
gothiclovemonkey: Hope you were able to start training for home-hemo and that it is working out for you. Please don't feel pressured to answer, just hope things are going better for you (I remember you were having trouble with a new graft and the center). We haven't traveled yet with our NxStage cycler but I think we could do it if we really wanted.
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Unfortunately, due to my access pooping out on me, i havent started training YET. I ended up going to get the right side graft fixed, they couldnt fix it, so i got a lovely cath in my chest... then the following week had another graft put in my left arm, being fed by the old fistula, they also removed the big lumps from it while they were in there (looks so much better, but now im all wrinkled skin haha)
Dr said as soon as I get the cath out (should be this tuesday *knock on wood*) and the lady is available for training, we can start. could be a month or two, as there is only one woman who trains, and she takes care of multiple clinics.
im a bit nervous still about sticking myself, or even having my husband stick me. the new spot is super sensitive. even them Emla cream doesnt cut it! its close to the back side of my upper arm... ouchy.
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Unfortunately, due to my access pooping out on me, i havent started training YET. I ended up going to get the right side graft fixed, they couldnt fix it, so i got a lovely cath in my chest... then the following week had another graft put in my left arm, being fed by the old fistula, they also removed the big lumps from it while they were in there (looks so much better, but now im all wrinkled skin haha)
Dr said as soon as I get the cath out (should be this tuesday *knock on wood*) and the lady is available for training, we can start. could be a month or two, as there is only one woman who trains, and she takes care of multiple clinics.
im a bit nervous still about sticking myself, or even having my husband stick me. the new spot is super sensitive. even them Emla cream doesnt cut it! its close to the back side of my upper arm... ouchy.
My husband had a chest cath until his fistula was ready to be used so I somewhat understand how "lovely" those can be. Fortunately, we have a hand-held shower hose so he could shower from the neck down (with the neck cath covered and taped up of course) and then we'd drape a large plastic garbage bag with a hole we made in it to poke his head thru and wrap a large bath towel around his neck to catch any possible water drips while I washed his hair in the kitchen sink. lol...I hung his garbage bag to dry out every day...don't miss that. FUN!! (NOT) I was always so afraid of him getting an infection but thankfully he didn't. The day he got the cath out and they used his fistula was a relief for us. Sorry I've strayed here...but I am sure the day you get to finally use your new graft will be a relief for you, too. Count this one up as your "summer project" and hopefully before the holidays things will be more routine and settled. Just keep in-mind that in-between stressing and having OMG moments (like I do and frequently I might add), remember that all this (using a cath or a new fistula or graft) can be done and is done by people every day. Every day that we do dialysis I tell myself that...
As for sticking yourself well, my husband sticks himself and my hands act like a guide. I glove up and simply feel for the direction things should be (the angle and direction for the arterial is slightly different from the venous) and then when he's ready, my hands ever-so-slightly guide his. Kind of in tandem. AND...I must admit, we BOTH stress out over sticking! As time has gone by it has gotten easier and even less painful for him but still, the anxiety is always there and oh my gosh, the sweat! Some days I think too much about it and think of it as being something absolutely crazy and unreal. Other days I look at it like it is a way of life for us now, just like it is for so many others. So, the anxiety lessens but is always there. Reality. If sticking yourself becomes too difficult or even too painful, I hope you will speak up to someone and just let them know you can't or don't want to do it. Nothing wrong with that. It's your body, you decide. Whatever you decide, please don't make yourself sick over it because that kind of stress is simply not worth it. Of course, if you do home-hemo then you or a carepartner will have to do the sticking but if it doesn't work out, then it doesn't work out. Maybe in that case you could look into doing the NxStage cycler at a center and setup and do everything else yourself as part of "self-care". For now, just get thru doing dialysis sessions thru a cath. We've all got enough on our plates to not take things one day at a time. :thumbup;
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Maybe in that case you could look into doing the NxStage cycler at a center and setup and do everything else yourself as part of "self-care".
Centers that offer "in center NxStage" are about as common as hen's teeth, however, it is easy to get a limited amount of self care on a traditional machine as a transient patient in a clinic. The staff is squirrelly about patients touching the controls (I once had to explain that the rule actually was "patient cannot touch the machine when the staff is looking" ;D), however, I have never had any resistance to self canulation.
If you use blunts, be sure to bring your own supply as not ever clinic stocks them. I had a treatment a small 6 chair clinic in Exeter NH that did not stock blunts, and had never seen a self sticker (the staff circled around to watch), but even then, there was no resistance when I told them I was doing that part of the job.
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Make sure you take all your needed supplies, I made the mistake of traveling to Georgia and Fresenius delivered my solution boxes to my hotel but I forgot to pack cassettes with me and ended up having to pay $400 for an emergency weekend delivery of cassettes.
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I believe we have a good number of clinics here in Las Vegas. You may have a better chance of using an in-clinic facility by going off the Strip. I am in Summerlin about 10 miles west of the Strip and use Davita. The in-center clinic at Summerlin Hospital has good nurses and is clean and well managed. The 5 Star clinic (Davita) and a Fresenius clinic just outside of Summerlin offer in-clinic and home hemo modalities including Nxstage. The Davita clinic also has a good staff and clean facilities. I recommend either as I have used both. I use Nxstage (unfortunately... but better than in-clinic). I do not know whether either offer self-cannulation.
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The 5 Star clinic (Davita)
Who gives out the stars?
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The 5 Star clinic (Davita)
Who gives out the stars?
my guess would not be the patients rofl (at least, 'round here, the davitas... not even remotely close to 5 stars...)
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my guess would not be the patients rofl (at least, 'round here, the davitas... not even remotely close to 5 stars...)
sometimes "5 Star" means something (for example, Michelin stars); sometimes it's nothing more than a self-bestowed accolade.