I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: RobinM on August 31, 2008, 03:54:23 PM
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Is anyone doing NxStage without a partner? I've got my mom and husband helping now, but I wonder about what would happen if I was alone. I don't ever want to go back to in-center.
Robin
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There are some centers that do allow NxStage without a partner; ours was NOT one of these. For us, it was mandatory that a partner train with the patient (every minute of every training session) and that the partner agreed to be in the home for each treatment when we got to "go home."
We trained with another couple at the same time. The wife in this group had just started a new job and had to leave training one day for about an hour to go to a mandatory insurance meeting (this was important for her job and to add her husband to her new insurance). The trainers gave her a hard time. Even though they were right there in the room with all four of us, they wanted the partners present for every minute. "What if something happens to your husband while you're gone?" and "You will miss some important training while you're gone," they said. I said, "Hey, look, I'll be her husband's partner for an hour, so nothing will happen to him without my alerting one of you two nurses. I'll also take double notes of everything you say and share with her when she gets back." They finally let her leave for the hour, but her husband didn't even need me to help with anything. I did share my notes with her.
I think the centers should ease up a little. Some people are completely capable of handling it on their own. My Marvin is not one of these -- he can't cannulate himself and doesn't even look when I cannulate (despite almost 14 years on hemo). Once the cannulation is done, however, Marvin can handle everything else by himself.
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I've been told too...several times...if Davita finds out I dialyse without someone with me they will make me go back in center...big brother is watching..........
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I don't understand what is so different in the US to over here in Australia. I am going to be doing my training on my own and my neph is totally happy for me to handle my own care. Sure, you have to be assessed to make sure you are capable of doing it alone but they really encourage you to take total control rather than depend on anyone else. I will be comfortable knowing there is someone else in the house if I do need help but I won't panic if I am on my own. I know...sounds good in theory....let's see what happens when I have to put it into practice!
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The partner is a must have to be accepted for training here. That being said, we do have some who are by there self at home. But they must have someone to back them up, if need be. The training is always a 2 person process here. A lot of the patients here, use a baby monitor in the house while on the machine. One in the room, and the other where ever the partner needs to be. That way, the partnere is not stuck in the room with you, but can here if anything goes on. :twocents;
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Lucinda,
The Australians are light years ahead of the United States when it comes home hemo, quality of care and quality of life. (and this is without the portability and simplicity of NxStage) I trained alone, http://ihatedialysis.com/forum/index.php?topic=5229.0, and dialyized alone for the year that I was on high dose home hemo. And I had never been healthier, nor more empowered. I was truly living my life.
High Dose Home Hemo is the way to go if a person is motivated and able. They should not be penalized for living alone. That being said, others have tried, and been overwhelmed. But the fact is that they were allowed to try.
The current 3x a week in-center business model is just that - a business model, designed to provide minimum dialysis at minimum cost. It is also a lesson in "Learned Helplessness". A person sits in a chair and sticks out their arm, and disconnects from their own self care. It is very sad to watch people who could be vital and full of life, resign themselves to misery.
We need more access to Home hemo, more self care units, and more nocturnal in-center programs. And we need our medical professionals to look at the Australian home hemo system and their superior outcomes. It is an uphill battle, being fought on individual fronts - a sad testimony to the current state of our medical system.
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Well said Anna.
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It's been done here in States - you just have to be willing to fight for it. I'm not sure I could manage alone - I've got so much scar tissue on my graft now, it's almost impossible for me to get a good stick one-handed. If I had a cath and no needles to stick, though, I'd be more than willing to try it on my own.
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Will be starting Nexstage training tomorrow (without a partner). I live in the Minneapolis area and solo Home Hemo is available. My doctor recommended for me.
My Detox Center for 3x/week is only a mile from home - I have made good friends w/the nurses and techs there. Altho, they aren't designated as my backup, it a comfort to know that they are near by.
It's the "supplies" that I dread!
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Ok I'm here in Wisconsin. My partner had to come to training once to learn about the machine. Other than that, he has come to one clinic meeting with my neph and nurses. Ive been at home for a year and a half.
My partner is available for hauling the boxes of supplies in the house. Thats it!!!
My kids are around to bring me the occasional blanket, or cup of water.
After that, I am completely self sufficient and that's the way I like it. I would not have it any other way!!!
My partner once saw the machine was blinking- the batch had expired and so he pushed "drain" but didn't put the drain line in the toilet and flooded out out living room. Since then he has been afraid to touch the machine. I'm ok with that.
Actually, a couple times I have tried to take off too much fluid and I had to get my kids to bring me a puke bucket; :puke;
once about a year ago I took off too much fluid and I asked my partner to quick get me an extra saline bag. He grabbed it but he was eating fried chicken and when he tried to spike the bag, his hands were all greasy and slippery! By this time I was cramping so I just told him to forget it and my son brought me a cup of water. You can imagine that was the last time I asked my partner to help me at all.
I think the most depressing thing in the world is to see people who are helplessly dependant, be it on a technician or an in home partner. I just cringe to see a person lay there and stick out their arm and wait to be told what to do, how to feel. thats why I left the clinic. it seems redundant to be at home but still be dependant on someone else to do your treatments for you.
I say go for it! if you can, without a partner. :thumbup;
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My dad trained as my partner, but he hasn't even touched my machine in a long time, and he's never cannulated me. I live with my parents now, but they are in bed before I get on the machine. I'll be moving soon, and I'll be doing NxStage completely alone.
Adam
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My husband is in the house somewhere but I do ALL of it on my own. Occasionally, when I use bags, he's kind enough to hang them for me but that's it. He was out of town for a few days and my 10-yr-old son was the one 'in the house'. Like Stefi said, I don't understand the dependency some have on their 'partners' at all. When I left in-center it was not so that I could transfer my dependency from the center to my spouse. I wonder if those spouses realized what they were getting into. The whole idea behind home dialysis is independence - at least it is for me.
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I've been dialyzing at home alone since 2002 - first on the Aksys and now on the NxStage.
I think the units that have strict "must have a partner present at all times" policy are misguided but the blame for all this rest squarely with NxStage. It is NxStage that included, without a rational reason, the trained partner requirement in their 510K application to the FDA during their initial approval process. I believe they regret that choice , however, changing it is as hard as putting toothpaste back into the tube.