I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: smcd23 on June 28, 2012, 08:43:24 PM
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Tony will be coming home at some point now that he lost his tx, and will have to do hemo. They don't know if he can ever go back to PD because he wasn't adequate at last check a few weeks before tx, and he's had so much trauma to his belly, it's unclear when he'd be able to start back on PD.
So I called the home therapies nurse at his clinic, the nurse we've dealt with (and don't love) while he was on PD. I asked her about NxStage and like everything else I've ever asked her, I felt like I knew more, or could find out more, than what she was telling me. She was vague and not helpful at all. She mentioned some things that I couldn't locate on the NxStage webpage. Hoping some of you NxStage users can answer my questions.
1.What type of "plumbing" does one need? She said a plumber would have to come and evaluate the home and potentially run more plumbing. We live in an apartment, I don't know if it's possible for them to access the pipes and run additional stuff if necessary. I am confused, too, because how does it work if you can travel with the machine? If it's portable, why would you need special fixed plumbing?
2. If you have a permanent catheter, do you really need a partner?
3. How hard is it to learn? She said the training takes a month, I'd have to be there the whole time. I don't think I can miss that much work.
4. Once connected, can you move at all? With PD he had a long tube and could move around the majority of our apartment (our bedroom, living room, kitchen, bathroom) so he could do all the things he needed to do like eat, help with dishes etc.
I am really really concerned about him starting in center hemo. I can't drive him and he will need rides - when he used to do in center hemo he would have to be there by 615 and if that was the case now, I'd have to wake up our child in order to drive him, come home, get child and I ready, get him to daycare, get myself to work, and then leave around 1030 to go pick him up and bring him home. As I mentioned with the training piece, I sort of need to work and keep my job. His morale also drops off significantly (what little he has) when doing in center because as he puts it, it's "deaths doorstep" He's seen a lot of patients in the few months he was there go from happy, vibrant and bright to near death in days. He doesn't want that to be him.
Thanks in advance!
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In reply to your questions:
1) NxStage does not need plumbing, just somewhere to drain, just as PD. if you use Pureflow which uses tap water to make dialysate, then I think a water quality check is done first especially if you are on well water. Your nurse should know this if they have NxStage or pass you over to the nurse that does.
2) A partner is needed in case the BP plummets and the dialyzor loses consciousness, so that the caregiver can give saline, put the dialyzor into Trendelenberg position etc. there are quite a few people who dialyze alone. My husband is present but I do everything myself. Most dialysis centers won't allow it which I don't agree with personally. Pees me off to think that adults have the right to choose to do a risky sports (which often results in other people risking their lives to rescue them when it goes wrong, but people are not allowed to be responsible for making choices about the risks that they are prepared to take to get optimal dialysis. Know it's all about liability, but it sure is a crazy world).
3) training does take about a month. For some people it can be less, but it is a lot to take in.
4) at most you can only move a few feet and for BP purposes, it is better to be sitting down, plus there is a chance of inadvertently disloding thepulling the needles.
Hope this answers your questions. Tony would undoubtedly do better on NxStage.
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So it really is just a drain tube? Our bathroom is like 6 feet from our bedroom, and the living room is like ten feet maybe? Can you have the machine say in the bedroom and sit a few feet away in another room? I don't want to leave the machine in the living room, ya know?
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You can connect two drain lines together just like PD. my chair is about twelve feet from our bathroom where I drain down the plughole in the bath. Other people have drained out a window into their yard.
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Seriously? Ugh I hate our home therapies nurse. She was all discouraging, she's been here for PD home visits and knows our set up and was saying they'd have to do all sorts of crap to make it acceptable for treatment.
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I just started nxstage in the last 6 weeks. I had 5 weeks of training and my daughter and husband came for about 2-3 weeks of that training. My center is very accomodating and when my husband got called away unexpectadly on a business trip they just said he could catch up when he got home. The training was not all day but ran from about 10 to 3 or 4. Don't forget that during training you will be dialyzing so you have to allow for that. It takes longer to set up at first because you are learning. While I was dialyzing they did "book learning".
For the 5th week I was at home and the nurse came to my house. This is the first week I am completely on my own (with the nurse just a phone call away)!
I personally cannot believe that anyone dialyzes at home alone. I know they do it but it seems so hard to do alone. I don't know how they apply the tape and remove the needles on their own. It is also hard to reach the buttons on the machine from the chair when you have to silent an alarm. I guess I am just not as talented as some people!~ :sos;
I did pd too and liked the fact that I could travel around the house at least a little bit. I am more restricted with nxstage. I just sit in the chair. I would be afraid of pulling the needles out if I moved around too much.
The nurse came and set up my machine. She ran two hoses from the machine to my bathroom which is about 30 feet or so. The other one goes into the toilet and is taped in place. These are up all the time and do look rather ugly in my house. We are going to try to reconfigure this so it looks less obtrusive. The pureflow machine sits under the nxstage machine and it makes the dialysate with water from the tap. When you travel you use bags for the dialysate and hang them from the machine on the pole provided. When traveling the drain line will run to the nearest sink or toilet available. Some people run the lines to their clothes washer set up. Some people put plumbing connections right behind their chair so there are no hoses or tubes running anywhere visable. It all depends on your house and it's set up and how much you want to put into it.
I thought my husband would really hate that the hoses show and that the machine is out in the open in our living room but he doesn't seem to mind at all. I know it doesn't look good or fancy but it keeps me alive. It's funny how what's important changes when your life is on the line.
When I first started training I asked about them giving me a dialysis chair and was told that they don't provide the chair. I read on this site that they are supposed to provide chairs and looked up the information on Medicare's website. Lo and behold it clearly states they MUST provide a reclining chair. I brought it up again and was told they never give chairs. I then provided the link to Medicare's website and again asked for a chair. I told them that I didn't want to cause problems but that I would call Medicare to find out for sure how I was to get a chair.
I wound up buying a recliner and then just found out today that they are now providing chairs for their nxstage patients!!!!!!!!!!!!!!!!!!!!!!1 Yay for me!!!!!!!!!!!!!!!! I am going to get a real dialysis chair and now the recliner can be for my hubby! I am proud of myself for pushing it and winning not only for myself but the rest of the home dialyzers in my center.
They provide all the supplies needed for dialysis. The tape, gauze, bandaids, syringes, heparin, masks, gloves, fistual needles, those absorbent sheets for when you hook up, dial soap, hand sanitizer, saline, dialysate, sharps containers, clip board, heating pad for when I get cold,and the SAKS needed to make the solution with the pureflow machine..... I bought a handy storage unit to keep by my machine and one to keep in the spare room to store more supplies.
So far my experience has been good and we are still learning everyday but I am glad to be home.
On the other hand this type of dialysis has much more of an impact on my family than either pd or in center hemo did. I hate that I am dependant on others to help me and to bring me things while I am dialyzing etc. Since I dialyze 6 days a week now it does take more time than in center hemo did. My runs are usually about
two and a half hours. I am starting to feel better and to have more energy. I am excited to see what the next few weeks bring as my body gets used to more frequent dialysis.
I also do my own lab work and they even gave me a centrifuge to spin my blood samples. I then refrigerate and send FedEx to the lab. Oh, they also gave me a fax machine so I could fax in my treatment sheets everyday.
I learned that people who dialyze more frequently with nxstage can live as long as someone who has functioning kidneys. Your food restrictions are less and you can drink more fluids. With nxstage liquid is not the enemy anymore!!!
I hope I didn't sugar coat this for you...I like to be honest about all of it. This is not perfect but for me better than in center hemo by FAR.
Good luck with your decision.
janet
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To put it bluntly, your training nurse is full of crap.
I have been on NxStage since October. Let me take your points one by one.
1. There is absolutely no plumbing required. They will provide a water line and a drain line. I drain into the toilet and the water line stays hooked up to the powder room sink. If you want to get fancy, you can hook up the water line under the sink if you still need to use the sink. This absolutely does not require a plumber, you can do it yourself as clear directions are provided with the hardware.
2. A care partner is needed, but not as necessary as one would think. I set up my own machine and put in my own needles. The biggest thing that I did to help myself be self-sufficient is when they delivered the machine, I had them set it up with the front of the machine facing my chair. It seemed like a no-brainer, but my nurse was so impressed that I did it that way. This way, I am in complete control of my treatment.
3. Training for me did take three weeks. It depends on how fast a learner you are. I could have gone home in two weeks. My husband only had to attend three of the training sessions, and even then he wasn't there for the whole time. It really depends on how much you will be doing as the care partner. Since he is the care partner in name only and is really just there for emergencies, the nurse didn't require that he be there every day.
Based on what you have said before, are you sure that NxStage will be right for you and Tony? For it to be successful, I feel like the dialyzor needs to step up and take responsibility for the majority of the treatment and not rely on the care partner for everything. But I also think that it will be good for you two to be home together. Either way, any time your nurse starts spouting BS like she has so far, come here and get the real scoop. ;D
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Well said, Cattlekid.
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If HD is his only lifeline, he may be willing to do more. With PD his thinking was always just that it was a temporary thing because he was going to get this transplant. Clearly he's going to need counseling and meds to fight the inevitable depression. I just know he won't stick with in center at all. He's always the youngest person there and that makes him more depressed and upset.
Thanks for all your info though! I was starting to think after talking to the nurse that NxStage would never even be an option but now I think otherwise. We *could* make it work if he wants to go this route. The plumbing thing scared me but the drain line thing sounds exactly like what we do with his PD line. And I'd they provide a chair we could buy a TV for our spare bedroom and make that his dialysis room. It shares a wall with the bathroom so we could get the landlord to put a hole there to run plumbing from under the sink.
Another question - what's the rule on pets? Our cat box is in that room now, would that be a problem? The cats only go in there to potty, so he could shut them out during treatment. Anyone know? Definitely can't ask the home therapies nurse because she thinks pets are evil. >:D
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the litter box i would move tothe bathroom or somewhere else. i just wouldnt chance it... me personally.
i compltely understandthe depressing in center... its seems so minor jus tsaying it now,but when u walk in there withur pillow and blanket and bag of supplies... it really hits u, i am too young to be dealing with all this.... idk i feel like i was really emotional on in center. I am by no means an emotional person, but i would cry all the time when i wa son hemo. Im almost 22 now, but i was 18 when all this first started, 21 when i had my round with in center. I have a lot of respect for those that do that method.iknow its not the method for me. this whole thing is heartbreaking to read..
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Not sure about cats, but the dog was a non-issue. He is not allowed in the room when I am putting myself on because I don't want to deal with the possibility of him jumping up and hitting my arm. But while I am dialyzing, he just sits on the couch and gives me soulful looks.
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I had plumbing run under the sink in the bathroom, through a tiny hole in the wall into the bedroom next to it. Hooking up the plumbing took less than 40 minutes. Even that was done only to keep the cords out of the way - it's not necessary. It's been a while, but I know my training was far less than what your nurse was saying, and my partner only came for a few sessions. If you do start training - get the instructions a week or two prior, so you can study them before you start. Also, look online for any videos showing the process. The faster you learn, the faster you can come home.
I'd move the litter box, too. There are all kinds of cute options for covered ones under end tables that can be hidden in other rooms - or you can temporarily remove the door to cupboard somewhere and put up a curtain with a tension rod. My cat did go in the room I dialyzed in, but not while I was hooked up and running the machine.
Is there another center in the area that does NxStage? I'd consider switching if there is to find a center with more support.
A care partner is a good thing, but not required if the patient can take care of things on their own. The best option, I think, is to have more then one person trained to assist.
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The training for PD was supposed to last a week, and he was done with it in half the time. I guess this is one way that being young is a benefit - easier to learn new tricks. I never actually had official training, I just read the book and had Tony show me once and I got it. I know there is a lot more with NxStage but hoping the young thing and being technically saavy would help him learn.
As far as other centers... The DaVita center does it also, BUT Tonys nephrologist does not go to that center. The nephrologist at the transplant facility may, and he could switch maybe but he really likes his neph. Just another thing to consider.
I can put the cat box in the closet of that room. Or in the kitchen in a corner. I could figure something out I'm sure.
Thanks for all the info everyone! I knew this was the place to ask! His nurse is.... Just ugh lol so I never listen to her 100%. I am pretty sure aside from sticking people with needles, I could do her job better. She's so by the book and doesn't think out of the box at all. If its not in the guidelines, it's not okay. (like using the microwave for heating manual PD bags old PD nurse said it's ok, this one freaks out)
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You can ask your nephrologist if he would be able to get privilages for the Da Vita unit. I don't think that it's a big deal for them to do this. My old neph. Did it for me when I wanted to switch units
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1. Plumbing is not necessary. They include connectors to attach the water line from the PureFlow SL to a faucet above the sink or below and a connector for a hose spigot used in washers or outside.
2. A care partner is not necessary. I dialyze alone all the time. However, it is a case by case basis and usually falls on the clinic to be the deciding factor. It has been my experience that Davita (at least in Tampa) is difficult to convince that a partner is not needed. However, depending on the ability of the patient a care partner may be needed.
3. Training for me was less than 3 weeks. I already had been using buttonhole technique prior to doing HHD, so I know that cut down a lot of the training time. 5-6 weeks is not unusual.
I am sure your husband will feel better doing HHD than being incenter. I only in my second day of training and was feeling better that I had in 10 years and most definitely better than when I was in-center.
Good Luck to you and your husband in this endeavor.
Les
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You can ask your nephrologist if he would be able to get privilages for the Da Vita unit. I don't think that it's a big deal for them to do this. My old neph. Did it for me when I wanted to switch units
I don't know if he will, though. He sees patients in the center right next to his office, and then comes down to the unit Tony will be going to once or twice a month also, so he's already in 2 centers, I don't know if he will be willing to go to a 3rd. But I wonder if the transplant facility recommends Tony go to the DaVita facility (and I know there are horror stories about DaVita floating around, but I am sure there are just as many about Fresenius) and give some sort of "medical" reason, if he will do it. Hrm, another thing to ask.
I am feeling very reassured by all your thoughtful replies. I appreciate the thought especially the details on the training. Really makes me think that our nurse is just being a pest and uncompromising to work with us to find something that will work in the patients best interest.
What sort of access do ya'll have? Tony has a cath right now, but I think they are going to explore a fistula (but they'd have to look at his 3 failed ones to see if it's possible to clean them or resurrect them in any way) and if not, a graft. Does the type of access make any difference? I know their site says it works with any type but wondering if there is a user consensus of what works best?
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My recliner is in the corner of the living room. I have a clear view to the kitchen and front door, so that I can see what's going on. We ran the Pureflow water line against the wall and then behind the fridge to the sink. The waste line also drains into the sink (we have a double sink). The lines are out of the way and aren't very visible.
When my family went on my brother's Make-A-Wish trip to Italy for 3 weeks, my husband and I housesat at my family's farm. Apparently, they have weird shaped faucets because we couldn't find an adapter to attach the water line to any of the 3 downstairs faucets. We ended up attaching a RV-rated water hose to the water spigot outside, running it through the porch window, and attaching the adapter to that. It seemed very redneck, but it worked!
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When my family went on my brother's Make-A-Wish trip to Italy for 3 weeks, my husband and I housesat at my family's farm. Apparently, they have weird shaped faucets because we couldn't find an adapter to attach the water line to any of the 3 downstairs faucets. We ended up attaching a RV-rated water hose to the water spigot outside, running it through the porch window, and attaching the adapter to that. It seemed very redneck, but it worked!
I like that idea! Gives me hope if we have to move into our father in laws house to help him out at some point. Could run the hose up the side of the house. Love it!
I am also glad some of you mentioned about draining out a window into the yard... IF we took Tony's dad's house that would be the easiest way to drain without doing some major renovations that quite honestly, I don't think the house could withstand. Yay! I am feeling more positive about discussing this with Tony and the home therapies nurse if he decides he wants to do it.
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I have a graft and it works great. I don't seem to have any problems with sticking. I hope I didn't just jinx myself here!
I know that people who have fistulas often make buttonholes so they don't have to re stick everytime. My center said they are having LOTS of problems with buttonholes and don't want to do them anymore. Way to many infections.
With a graft you can't buttonhole so I will have to stick a new hole each time.
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Shauna, I think NxStage would be a great option to consider. Don't let that naysayer nurse deter you. I am beginning to suspect that you are Superwoman and can do anything! NxStage is built to be user friendly. That's the whole damn point! And I suspect that there are new home therapies/machines on the way.
Let's face it...incenter hemo is so labor intensive and is just not a good option for patients like Tony who are not part of a really fragile population. You are a smart woman, so the training will be manageable. Always remember that the whole idea is for patients to be able to take their dialysis home. If they made it too complicated or too overbearing, patients would not chose it as an option.
Tony has already done the incenter thing, and I can certainly understand the psychological distress that comes with dialyzing with people who are clearly at the end of their lives. When I went to my D clinic to see the social worker or the nutritionist, I was so sad to see the lines of elderly patients, newly dialyzed, waiting for their rides home. I just couldn't see myself in that position, and it was very upsetting.
I think most people will tell you that home hemo is not the perfect life and it can be cumbersome, but at least Tony will have time at home with his family. Children are remarkably resilient, and I know your son would come to see "Daddy on his blood cleaning machine" as just a normal part of his day. I envision the three of you sitting down and watching a movie together as Tony dialyzes. Sure can beat having him spend so much time away from home in a clinic.
My husband called NxStage for me and got them to send me some literature. Why not do the same? They send you a video about it, too, which is informative.
I'm very eager to hear what your next step will be.
Oh, btw, if Tony does end up doing home hemo, you might think about doing nocturnal home hemo. I know Desert Dancer does that; she is our resident expert. I met her in LV last year, and she is the picture of health. She has posted at length about her experiences. I'm sure she will be of enormous help. And as you've seen, plenty of IHDers have chosen this modality.
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MY husband started Home dialysis when My daughter was only 6 yrs old. She is 20 now. It's amazing how fast she got used to the machine and the bags and the boxes. (you can make GREAT forts with a weeks worth of empty PD boxes!) We used to have nights when we would "Picnic on the Bed" while he was on the machine. Kids are amazing in their ability to adapt to most situations and I know it was better for him to be home with her than at the center.
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We DID have a plumber come over, per our nurse's wishes (it was covered by Medicare). We have a basement, and all he did was drill two holes- one for the water, one for the drain. I was expecting to have hoses taped down to the floor and running all over the place, but we have none. It's all coming and going from the basement.
Interesting about the recliner. We were never told that one would be paid for; we bought one ourselves.
Our training took about 3 weeks. I'm so glad I had the foresight to use some of my built-up paid time off from work. I was able to take off about ten days of the training time to devote to it. We were there for about five hours every day. On the days I worked, we'd do training for 5 hours, then I'd go work for 8 hours. It sucked. I am the care partner, but my husband learned everything right alongside me. We believe that two heads are better than one, lol. He has helped me a lot.
He has buttonhole access, and the nurse says he has some of the best ones she's ever seen. I'm really anal about cleaning and disinfecting. Inserting the needles hasn't bothered me, only now that we're home I'm having issues getting one of them in just right. The chair and the angle are different for me. He does not self-cannulate, though he wanted to learn to do it. Our nurse rather discouraged it, but I think if he insisted she would work with him. She has been fabulous to us.
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I am so encouraged by all your replies! Our spare bedroom is the PD supply room. I told Tony last night if he wants to think about it we could get a TV to put in there and run the line from under the bathroom sink and through the wall in there and run the drain line out through the door to the toilet. Then he could go on at 8 when our son is in bed and we could watch TV in there at night. I have my crafty stuff in there and with some reorganizing we could fit a desk too. Or we could do the same thing into the living room from the kitchen sink and he could sit on the couch, but the drain line would need to run farther. Is the drain line like a PD drain line where you set up a new one each day or is it permanent?
He also said all the plumbing at his fathers house runs up through a closet and into the attic so if his dad wants to move out and give us the house, that would be okay too ;D
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You don't discard the drain line each time but it could be wound up and stuffed out of the way. Sometimes if I need it out of the way, I wind it up and put it in a ziplock bag.
Chiawanna, the buttonholes may be at the wrong angle for your husband but he may still be able to self-cannulate if he wishes. My nurse established mine and I can do it. I use touch cannulation that is promoted by Suart Mott, a cannulation specialist on Home Dialysis Central.
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So it really is just a drain tube? Our bathroom is like 6 feet from our bedroom, and the living room is like ten feet maybe? Can you have the machine say in the bedroom and sit a few feet away in another room? I don't want to leave the machine in the living room, ya know?
You won't get much separation from the machine and him. I do not know of longer tubes. You can get a decent distance with the drain tube, but not from the machine itself. He'll be parked pretty close. (A foot or so?)
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Seriously? Ugh I hate our home therapies nurse. She was all discouraging, she's been here for PD home visits and knows our set up and was saying they'd have to do all sorts of crap to make it acceptable for treatment.
They can have to, but it's not required. I had no plumber. My fill line is connected under my kitchen sink and run all stealthy like into the living room where we do treatment. The drain line is looooooong and you can get probably to your neighbors house, if'n ya wanted to. :)
I haven't finished the whole thread here, because I would never remember all the questions I wanted to answer, but the reality is, it sounds like you have a crap ass nurse and you need a new one.
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Is there any possibility of looking for another dialysis unit? It sounds like you are going to have a tough journey if this nurse remains Tony'snurse and he chooses NxStage. She sounds very negative to me?
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She is negative. I strongly dislike her. We've been talking about it. He may switch but he wants to get through the next few weeks before he makes any decisions.
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So it really is just a drain tube? Our bathroom is like 6 feet from our bedroom, and the living room is like ten feet maybe? Can you have the machine say in the bedroom and sit a few feet away in another room? I don't want to leave the machine in the living room, ya know?
You won't get much separation from the machine and him. I do not know of longer tubes. You can get a decent distance with the drain tube, but not from the machine itself. He'll be parked pretty close. (A foot or so?)
We have a little storage cart between my husband's recliner and the machine (that's where I set up all the supplies for the treatment), but that's about as far away from the machine as we can get. I wasn't thrilled about it being the centerpiece in our living room, but he didn't want to be stuck in the bedroom or anywhere else just sitting there being bored. In the living room we can be together, watch TV, and it's not far from the kitchen so I can make dinner, etc. This is our life now!
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Ours is a totally different layout than others on here. We don't have a recliner, he dialysisis in bed. We sit up watch TV, eat, play games or whatever. Generally he sits with a pillow under his fistula, when he is through sitting, he lays down until I unhook him and he falls asleep where he lays. He doesnt have to get up or anything. He collapses right in bed where he is.
The bathroom is right near his room, so it is not far to run water lines to pureflow & drain lines to toilet. JusJenn is right, there is no more than 2 feet distance between him and the machine, but ample extenstion for the drain. Sometimes, John and I will go out on deck and dialysis with hanging bags. Plug cycler up and hang bags and drop drain in to the yard. We love to D outside, but as of late, its too hot!
I second the nurse, talk with neph about getting a new one! We 've gotten another new one (not our idea) and sometimes she just doesnt get it! She'll send labels for labs on days he doesnt dialysis, so I just didn't send them. If you do that enough times, she will finally get the message. Now, I tell her when to order labs and send the lables. You don't have to be rude or anything, just be all nice and say, well he is not dialysising that day, and eventually, she/he will get the message. I miss our first nurse. He was great. Still text him from time to time. Very good friend too!
Stay on top of it, it will get worked out in the end.
God Bless,
lmunchkin :kickstart;
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My labels are dated. I just do the lab work as soon as possible and change the dates.
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Me too. This month, my nurse wanted me to do my lab work on July 4th, which was not a treatment day for me. She always told me that it was acceptable to cross out the dates on the lab slips and tubes and just write in the correct dates.
My labels are dated. I just do the lab work as soon as possible and change the dates.
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When I do my labs I also just change the date to the date I do the draw and have had no problems doing this. My nurse told me to do it that way when I was trained since she knew that the date she selected was probably not the day I would draw them.
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Ill try that next time I do labs. If its not a day I dialysize him then I will change the date. Thanks for the input.
lmunchkin :kickstart;
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Amanda, sorry it's taken me so long to get back on this topic. We started having some real issues cannulating (or I did), and I was concerned that I might ruin his buttonholes. So I watched a video about touch cannulation and decided to try it. As hard as it was to get his needles in, I was pretty sure that it wouldn't work. But you know what? It DID. It was amazing!! The needle just slides right in, I get flashback every time, and I'm not sitting there digging around in his arm. Our HHD nurse raves about him having the best buttonholes she's ever seen; I don't want to be the person to mess them up!!