I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: boswife on September 25, 2010, 05:58:34 PM
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We're in the process of getting buttonholes in prep to possibly going on home hemo. Theres a couple of previously NXstage users back on 'incenter' dialysis where we do treatment. Each has said that it just took up their lives and that of their whole family to do it at home. That it was VERY intrusive on their lives , and not the *fredom* they had hoped for. Im a bit discouraged, but still do understand that everyone is different. We have only a 5 min travel back and forth to D as it is so that is not huge prob for us so what im looking for is the 'easier on the heart etc' benifits so am not real worried about being "put out" by the whole thing. Any advice you would like to offer will be much appreciated.
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It seems to this newbie that if your husband is doing well in-center and he likes his treatment in-center, why would you change?
However, more often than not, there is a significant portion of patients that don't do well with the 3x weekly dialysis and many times they also have objections to the way that they are treated in-center. In those cases NxStage is certainly a viable alternative, if available. Most NxStage training centers would also like you to commit to a 6 month trial of NxStage before you change your mind, and this is in addition to the 3 to 5 weeks of training that you would have to go through.
So perhaps the real question is whether it is worth 6 or 7 months of your life to find out the possible benefits.
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I'm not gonna lie, it does take up a lot of time. But would I do it any other way? NO. I love every second I spend with my husband. And I do love the freedom that Nxstage gives us. We choose what time to do it, so we don't have to miss anything in our lives. We choose our days off and we can just up and go to the shore, AC or even camping whenever we feel like it we just put the cycler in the car and the supplies and off we go. I also love the fact that I control his treatment, his center loved to over dialyze him sending him home with cramps, headaches and vomiting, plus he seemed to always be missing important things our kids were involved in because he had treatment, that is not a problem anymore. I was the one that decided to do Nxstage after reading how much better and gentler it was. My husband though it was to much work for me, but I convinced him it was my choice and if I didn't want to do it or if I felt it was to much I would let him go back in center. The first week home I was so scared I wouldn't be able to do it, I was getting overwhelmed with all the steps and all the alarms and my husband kept saying I should just go back in center, but I was stubborn. I wanted to have the best treatment and I knew that would be at home. Now it is almost a year later (we started training in October) and I don't regret my decision at all. Good luck in what ever you chose to do. Keep us posted!
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Because NxStage is more often many patients have said they feel better than on 3X a week.
You might want to read about Epoman's experience training on NxStage http://ihatedialysis.com/forum/index.php?topic=813.0 and check out Meinuk's too http://ihatedialysis.com/forum/index.php?topic=5229.0
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All great points (and last night i did go through all of Epomans experience but not Meinuk's yet so thank you on that :) )
in center is really quite fine with us on one hand, and quite the social experience as hubby is very friendly, and i have become the ~go to mc donalds for coffie+burito lady~ (which is really something for a social phobic me) so all in all, our experience has been good. But............ Im looking into this for the same reasons as vcarmody. I want this to be as soft and easy on hubby as i can possibly contribute. And I too am the instigater in all this just as vcarmody ;) It's really good to hear that it is worth it and can work so well. The two at our center that were at home both had more than just them and thir mate, so that may have been a bigger issue as well. So, we shall see, love to *hear it all* from anyone who whats to offer anything here . its all appreciated. Thanks
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I really like VCARMODY's reply, if sums up our experience quite well, and in our case it really strengthened our bond. Like so many other couples we had a good marriage but had settled into a almost ho-hum routine I guess, then ESRD struck and she spent 2 years in-center, which was a good one, but rigid scheduling, those incredibly uncomfortable chairs and so forth made us really push for NxStage and because of that we were the first in the area to learn it, once settled into the daily treatments and gaining experience on it there was no way we would ever go back to the old way. the upshot was that we were able to spend 5 or so hours a day closely working together and enjoying each others company. I wouldn't trade those last 3 years for anything.......
Tom
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I really preferred NxStage over in-center. I could drink more because of having the fluid pulled off more often. I could eat more of what I wanted without the worry about potassium build up. (They had to switch my prescription because my potassium became too low.) I felt better from the first week - more energy, less foggy-headed. I could do it when I wanted, on my schedule. I could switch days or times whenever I had a family occasion to go to. I didn't have to freeze in the center's ac, and I didn't have to listen to my in-center fellow patients vomiting, or smell when the senile little old lady next me used the commode during her treatment. My friends could come over and visit while I was on the machine, or I could do crafts with a big table pulled up to my chair. I could watch my favorite tv shows instead of crappy daytime tv, since I could schedule my sessions for when they were on at night. Or have 6 or 7 books to pick from without having to carry them all with me to the center. I could yack for hours on my phone, compared to being in a center than didn't allow them at all.
I did 5 days a week, since that gave me excellent numbers without needing to run for 6. I just never had more than one day off in a row. Soooo much nicer than the huge, fluid retaining gap over the weekend in-center. I hardly ever cramped with NxStage, since I could set my own numbers and change fluid goals up and down repeated during a single session if I needed to.
My nearest center was an hour's drive away, so I actually cut down on time spent for D, even if I increased the time on the machine. Plus, I live in Michigan, so not risking driving during the winter was wonderful. I also saved a lot of time that had been spent sleeping to recover from in-center, too. The 3 days I went to in-center D were pretty much a write-off most of the time. I tended to come home and nap whenever I'd had a tough run with cramping and crashing. I didn't need to nap after NxStage runs, and since I usually did them last thing at night anyhow, if I did feel crummy, I was headed to bed right after anyhow.
I do realize that it's not the best solution for everyone. For me, though, D stopped being this dreaded, unavoidable appointment and became this vaguely boring chore that had to be done, like doing the laundry. There's a lot to be on top of and in control of - inventory, scheduling, cleaning, set-up, reporting results to the nurse, etc. If you are more hands off in your approach to your health care, then it's all going to seem like an excessive amount of work compared to showing up to the center. If you are a take-charge, do it my way sort of patient or caregiver, though, it's really much better than in-center.
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I still have a phobia about boxes. (NxStage in a tiny one bedroom apartment is a commitment.) BUT with two years of hindsight, I can say that was the only real drawback to NxStage that I had. All the political stuff was just unique ugliness that could happen anywhere - sadly, it happened to me. I don't blame NxStage for that, on the contrary, it was NxStage that was quietly "on my side" - I blame DaVita. But I digress.
You still need to schedule your life around your dialysis treatment, but it is YOUR schedule and YOUR life. NxStage is empowering, tiring,your home becomes your clinic, you have more physical energy (all the better to move boxes with) but above all, you are HEALTHIER!
It does take a certain mindset to overcome self cannulation, self centered therapy and management of supplies, records and all of the details that come with at home dialysis. But for me, it was all well worth it.
I look at dialysis as being a part time job. Either you can work from home, or go into the office. But, you get "Paid" better when you work at home.
I did my dialysis alone, so I cannot comment as to the family dynamic of taking dialysis home with you, but my hopes would be that your family want the best of health for everyone. Still, I look at Zach's example of thriving in center at a great unit, and I know that it can be done.
It was because of Epoman that I blogged my training (and written about pretty much everything else dialysis related that I have done) my advice is educate yourself, really look at your lifestyle and then make your decision. But even if you try it, you can always go back in center - nothing ventured, nothing gained. I was feeling the difference after my first week of training.
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Im loving, and appreciating, all your inputs. I thought the main thing i needed to over come was my fear of needles. That is happening, though some days are worse than others. (we're starting buttonholes on hubby and i am watching very closly at the process, and not passing out, sweating, getting dizzy or anything) I know i am one that can accomplish this as im very stubborn that way, now we just have to figure how we feel about the rest. Im hoping they will let me do his needles in center for a while and see how we feel about that and if that initself is enough to make us more comfortable.. We shall see, but once again i thank you from my heart for helping me through my/our decision making process..
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I've never done nxstage since it wasn't and isn't available here in Canada but I did several years of home dialysis (5 hour runs x3 weekly at that time). I liked the control and the freedom of being in my own home but I found it quite stressful on my marriage since my husband was essentially confined to the house for all that time too. I was 26 and he was 32. I did my own needles although he set up the machine and broke it down since my job made that the most efficient way to go.
Having said this, if I had to choose at this point, (I'm now 57) I'd do Nxstage with him as backup but I'd do everything myself, including buttonholes and I'd try to free him from the burden of extreme caregiving. I know that there are many who don't view it as a burden but short term is one thing, week after week is another and I certainly viewed myself as burdensome...a most uncomfortable thing for me personally.
The last time around, prior to my current trx, I found the best solution for me was the self care clinic where I did everything except break down the machine at the end but there were nurses present in case I needed something...like having my pen retrieved from the floor for example.
Good luck in finding what works for you both and in making it support rather than erode your relationship with each other. Oh yeah, and keep on talking about how each of you are feeling about things as you go along. :grouphug;
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Hi! We are newbees and been at home since end of July after a month of home hemo training. At first I thought that it was overwhelming (the training, boxes, etc.). And, honestly, it is challenging and scarey at first. I had a hard time with one of the buttonholes (venous) and the nurses did as well. . . But that seems to be better. The needles were by far the worst thing for me!!! It would work fine for a week and then it would be a disaster and couldn't find the vein to save my life! :banghead; However, (Knock on wood), the last two weeks have gone swimmingly and I think the buttonholes are finally established and it has become a slam dunk!
Since I work, it was transparent to me when my husband went to the center. It really didn't affect me. Now that we are home, it has become a major part of my life as well. Yes, it is a 'half time' job. However, we have such great flexibility. For example, we usiually run from 5:30 p.m. (when I get home) to 9:30ish. He is able to eat, drink and watch TV in the comfort of home. When either of us start to complain that "we are stuck sitting here", we remind each other that all we have ever done in the evening is sit, eat and watch TV in the evenings......... SO THERE IS NO DIFFERENCE!! Also, if we want to skip a Saturday and run Sunday morning instead, we are able to do that. If we are going out to dinner (on the weekend), we run in the morning.
As VCARMODY and SILVERHEAD said, it does create a greater bond. We have been married for 37 years and certainly fallen into a routine. Now that routine has changed but in many ways for the better. We do spend time together while he is on the machine which has turned out to be a good thing. You could say that we have taken up a new hobby! :rofl;
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My husband is on NxStage for three years now and we are grateful for it. He was in center for the first couple of months after he was diagnosed and our experience was not good. He crashed a few times, one time ended back up in the hospital for dehydration (terrible experience), felt worn out every time after the treatment, and we both felt that the attention he was getting from his nephrologist on his once a month tour of the center was just not satisfactory. However, I have to say that the center and its staff were very nice and caring, but it just wasn't for him. So, we started the training for NxStage and from the very beginning, my husband felt a whole lot better! No more crashing, we were able to control how much fluid to be taken off, etc.
It was stressful when we first got home, I was afraid of bad sticks and red alarms, but we learned it, and I am no longer panicking. I know that either a tech from NxStage or our nurse on-call are just a phone call away.
We start when I come home from work. He has already prepared his part, I come home, change, prepare my part, hook him up, give him his computer, he watches his shows, I read my books, knit, watch TV, we are together. And as others have mentioned on previous posts, it brought us even closer. We are in it together. Is it tiring? Yes it is. We have to stay up late, and I like to go to bed early. But that really doesn't matter because nobody would ever tell that my husband has such a serious illness. His KT/V is great, his doctor is happy, in our center they say he is their "model patient". His labs are fantastic. What else can we ask for? There is no doubt in our minds that we did the right thing. We have two days of, Wednesday and Saturday. I catch up on sleep on these days. And everything is fine.
However, we do not have children. Many times I thought how we would have done it all if we had any. That, I really don't know.
Good luck, and I hope you decide what's best for you. But have in mind, that you can always go back to in-centre if NxStage doesn't work for you guys. You don't know until you try. Best wishes, and we will be here for any questions. I learned so much from this site.
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gosh you guys are GREAT!!! we are so much more leaning to at least giving it a go and really getting excited about it!! Still not positive, and some of the family (adult children) are worried that our house will be like a clinic and not as welcoming but I dont *think* one little ole machine will turn us into a clinic??? (i do get a kick out of "still having phobias about boxes though..lol) And,Im just a tad worried about my grandbaby (2yrold) but he's grown up around us and is wonderfuly respectiful of our NO NO areas ;) I know this is going to sound selfish, but i also got a pinch (just a pinch though) of worry that i'll miss "my" time where after i get him all set up at the center, i take my two dogs to the dog park, ride my bike and visit our daughter.. But!!!!! now, i can do that on the mornings where he wants to laz around or, he join me at the doggie park and do his morning exercise there..yea!! good idea jill :2thumbsup; ... I think this was the only drawback for me i've found though so that's pretty good.
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At my house you cant tell I am on Nxstage, I have everything put into my bedroom closet, when it is time we just wheel it out. My children are grown, but my daugther has three children and they live with us and there ages are 7, 5, and 3 we tell them that its my kidney, it seems not to bother them. I would never talk anyone out of doing nxstage. It is a totally different life less restrictions, more energy, you have more control over your health, and most important you do it together. Cookie
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YEAH!! thank you cookie :-) hubby JUST asked me to find out if it was "roll away able" so i came on to ask that very question and saw your answer right here..lol Thanks a bunch... I cant believe im getting excited about this.
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Hi, Bos - Our son and daughter and their two children (ages 2 and 4) live with us. They have both been told that the machine is dangerous and not to be touched and that is fine. They come in and kiss my husband goodnite and talk about the machine 'cleaning poppie's blood' and joke about nana using the needles on them. All very normal to them. The 4 year old was telling people at the park that nana was sticking needles in poppie and spilled blood on the floor!!!!!!!!!!! Still waiting for Child Protective Services to appear at our door! :rofl;
The other thing that everyone has touched on is that you can go away and bring the cycler with you. Gives you alot of freedom. We just went to the river for 4 days. It does mean carting a 75 pound machine and numerous boxes but was definitely 'do-able'.
Good luck no matter what decision you make!
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Spilling blood is inevitable no matter how careful you are, although I was very prompt at cleaning any spillage, bedding and linens were promptly rinsed, treated and washed before they could set, for the carpet I kept a "Little Green Machine" primed and loaded and was always able to get the blood up with a little help from OxyClean, but Sharon always was joking about the fact that if a Forensic Squad ever went over the house they would think some kind of slaughter had occurred there.....
Tom
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Yes!!!!!!!!!!! There was one night that our bedroom looked like a crime scene! (Forgot to clamp the line prior to disconnecting!) We have hardwood floors and have the Clorox wipes on hand at all times!
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yeah for hardwood floors!! We have them too throughout the house so we got a good start on that mess..lol Guess im going to be getting a nice dose of what i fear the most....needles AND blood..ick,,but im getting there. I even stood by and watched another friend in dialysis do his set up, and needles and he talked me through the whole thing.. By the time i go for training, im going to at least have a clue as to what im in for.........With much thanks to all of you!!!!!!
PS..my friend at D told me his reasons he's back 'in center'. Was just family matters and will go back when situation changes. Encouranging!! He also reminded me how we dont HAVE to stick with it or feel guilty if its not for us. I like that too and all of you have given us the same advice.. Very amazing, and empouring im beginning to feel and i havent even stuck him yet..lol
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Amen, sister! Give it a shot and see where it lands. I can honestly say that it does get easier! thank heavens! And, on some level, sticking needles into ones husband sometimes feels good! :clap;
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Sharon quite often told people that i was one of only a few men in the world that was legally allowed to stab his Wife twice a day for 5 years, and yes some days there was a certain perverse satisfaction in doing so.....
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My husband made my stand and put wheels on but you can get some at lowes.
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Epoman started a thread for people to post their home set ups.
http://ihatedialysis.com/forum/index.php?topic=375.0
I posted pictures of my beloved (NOT) boxes in my training diary at the bottom of the first post.
http://ihatedialysis.com/forum/index.php?topic=5229.0
As for leaving a blood trail.... there was the day I didn't tape my venous properly, and it was like a paint gun attacked my livingroom. That was when I wrote about having a "Carrie Moment". You do get desensitized to the blood - really.....
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I have no personal experience with NxStage or home dialysis, but I can tell you that when I asked my Nephrologist what he would do if he were in my position he said he would do home hemo hands down. Good Luck. :cuddle;
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We purchased a Safco printer table, it is on wheels so we can wheel it around. Originally we had a whole bedroom just for his treatments, but my oldest daughter moved back home and we moved everything into our bedroom. We have a very small 3 bedroom house so we put all our supplies in the dining room against one wall. When people visit they only see the boxes and they are stacked neatly. The thing I hate the most is the boxes after they are used. We recycle them, so they all have to broken down and tied up and tying them up is a major pain in the butt!!!
The only thing I want to stress is that it does get easier. Don't give up if you hit a few hurdles in the beginning, to many people give up right out of the gate without giving it a chance. I know I almost did, and I am so glad I stuck to my guns and kept at it. We are pretty new at this also we only came home in February and today we booked our third cruise (we already went successfully on two). Love the freedom!
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you guys crack me up with your somewhat satisfying enjoyment of 'sticking' your partners..lol I do hope i get ther as well..hehe
As for all the great pic's of the "set-up's", whew, a bit intimidating for sure. Sort of knocked my excitment down a notch :rofl; i do love all the ideas though, just kinda a lot to think about. At least we do have the room, and easy acces from room to room so we can wheel it away. Im sure glad you guys keep saying "it DOES get easier" cause it sure looks like a whole lot of learning and dooing :o
On the other hand, we are going this thursday for the Tour and 'talk' about getting started :clap;
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Hate to say this and jinx myself for sure..........the last two weeks have been fantastic! Suddenly the needles seem to be sliding into the buttonholes on the first try.........setup time has dropped dramatically..........and alarms have been few and far between and seem to resolve themselves!!!! So we have come a long way. (Famous last words..............)
But, do the tour, check it out and let us all know how it went!
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You know you have been Care taking to long when the alarm sounds off and instead of going into super panic mode, you mumble "can't you wait until there is a commercial on?"
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Ain't that the truth!!! Husband always points out to me that telling the machine to 'shut up' doesn't work!
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im hoping this picture shows up... We were travenling down an unknown road when i saw this and took the pic with my cell phone.. It made me laugh because my first thought was........ Do they do HOME dialysis..lol yeah, it came through but kinda small........those are all flattend boxes..hehe
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and....... No jinx lillinny, just good work :-) Im so happy to hear this and cant wait till i *get there*!!!! Same with Silverhead's comment :2thumbsup; I surly hope to join you in your successes :pray;
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Ah, yes, the beautiful showers of sparkly red rubies....just when you are sure you are completely clotted off.
I left the room-sized throw rug that was in the D room with my trailer when I moved. It didn't go in my new place, as everything big enough was already carpeted anyhow. So the folks who bought the trailer got it if they wanted it. It wasn't stained, as I used an awful lot of hydrogen peroxide on it whenever I sprung a leak, so it looked fine.
I just hope they never have a break-in and have to call in the crime scene investigators. They'll end up being charged with murder, and the cops will be trying to figure out where they hid the body.... ;D
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I'm laughing! Our 'dialysis chair' would light up like a neon sign if the forensics guys looked at it! Another great night of dialysis with easy sticks! I'm in heaven. I think we may have finally gotten there (again, famous last words!).
I loved the pic of the truck with the boxes. That is what our garbage truck looks like after they pick up all the flattened empty boxes each week! :yahoo;
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yikes!! sparkliie red rubies???? So are ya all saying to get something very washable for a chair/walls/floor???? lol
and im sooo gladd for ya lillinny on your 'sticks' .. What a great feeling! and so encouraging. Wish i was ithat far along already!!
but at least....... We went for our class tonight.. sure sounds like it will be a GO for us. They even told me to have our unit train me to do his button holes so that will be one less thing for me to learn when he's ready. Though, after talking to her, i feel like i would prefer her to do the training. She's great and she does do that but because i have to wait for i think 2-3 weeks for an opening, i could still get started with 'training' early.. oh, and i guess forgot another step in this process. Telling our Neph..yikes!! but i wrote him tonight and i dont see a problem there. The 'center' doc is all for it.
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I had an oatmeal colored rug and a cream colored corduroy chair, both of which looked just fine when I stopped doing home D - you just need lots of hydrogen peroxide to eat away the blood stains!
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From ready all the comments, I guess I had better get the carpet pulled up and laminate put down?
I have learned so MUCh from you guys!
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I am very happy we have wood floors. Yes, I have made a few opps like forgetting to clamp after giving him his heprin. All human errors that I have noticed once you do it once your really careful not to do it again. Aww the joy of learning from your mistakes. I think my biggest mistake was when I disconnected the venous line at the end of treatment instead of the arterial and hooked it up to the saline and hit add fluid. By the time I realized my mistake the saline bag already looked like fruit punch with his blood all mixed in with the saline. It took me a minute to realize I mess up. Hopefully I never do that again! Good luck and keep us posted on your training.
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hahahah on the pic of the boxes. Although I did get some satisfaction on recycling day! Slicing them up and setting them by the curb mean that they were no longer "right there". That being said, a helpful hint that I got from an IHDer was to stack them to be a side table, then throw a big, pretty scarf over them.
I do have to admit though, one morning when I was not at work, one of my interns stacked about 20 boxes for an event in my office. When I got in, it was the first time I ever screamed at an intern. That was when I knew that the boxes had gotten the best of me and I needed to take a step back and look at the big picture.
NB: The intern survived and was perfectly trained for his new job as a police dispatcher... (Ok, maybe he is a lawyer now... but doesn't police dispatcher sound better???)
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lol Meinuk, it was YOU that gave me that picture first......in my head..lol Its one of those..."You know your a caregiver" to a (home) dialysis person when.....you see a truck full of boxes and figure they B doen home dialysis too!! hehe This box thing im afraid is going to bug me so gonna have to get that figured out. What do you do?? Have someone come pick them up or they get sent to the recicle dump?? hum
And,,,i too love our hardwood floors. Gues they'll be comming in handy but it is great to know that other things can get all cleaned up with a little peroxide.. always learning..
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Hah! Boxes!!! I was lucky. I lived in NYC, and recycling was picked up every Monday. I just needed to flatten them and put them by the curb. I wrote a post about recycling on DSEN (it is pretty boring) http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/home-hemo---tra.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/home-hemo---tra.html)
When I would put out the Pure Pak (water purifier) every 90 days or so, because it looks vaguely like computer equipment (but REALLY HEAVY) people would take it before the garbage men came! I felt sorry for them after they lugged it home when they opened it up and saw that it was just a used water purifier. (but they do cost $700.00 each!)
I've read that some people list them on Craigslist, and people do come and get them. If I had lived in Maine (where I grew-up) I would have burned them in the woodstove during the cold months, and had a massive bonfire in the warm months, but that is just me, I am a pyromaniac.
Here is a picture of my attempt at turning a dialysate box into a solar oven while camping. It failed only because I didn't have glass to trap the heat inside. It was me being bored in the desert armed with tinfoil, duct tape, dialysate boxes, firewood and a garbage bag. I just wish it had worked.... sigh.
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Well Meinuk, that wasnt boring at all... It all has to be considered when taking this on.. At our class it was good to hear we get ALL the supplies including wipes and those little things that add up. Right now, it seems sooooo much to take care of much less learn.. Its all worth it though if it keeps hubby around that much longer and feeling good. Also, very interesting about 'assist' dogs. (it was on the same page) Im fortunate to be partnered with an assist dog myself (different reasons of course) so i know what greatness they do. '
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Hi there I am a care giver and one of the pain in the ass dialysis techs that works in the clinic. My fiance has done home hemo for a little over a year and he feels a ton better now than when he was in- center. Before he did home he was wipped out and then his body would not (as he calls it) shut down. He could not sleep at night and then the next day he would sleep all day. He had no life he was either sick or sleeping all the time when on in center. Now it is so nice to have the man i love in my bed asleep with me every night. It is nice to have him wake up and be happy and not sick 99% of the time. As I have said many times before I never knew how the patients felt when they went home and now I do. Now I know all aspects of it and as much as I love the job I recommend home hemo do everyone and anyone just because I know how much better my fiance feels. I hope that you look into it and see the freedom it will give your husband. Good Luck. I hope I have helped you and if you have any questions feel free to drop me a line!
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thanks a bunch dialysismoma .. You surly are helping.. All the encouragement is welcomed!! Hubby is well on his way to home D we just have to finish up his buttonholes, and then we start training... Well, actually, we dont get to start till November i think but that will be ok too.. I want to get the 'show on the road' as soon as possible while im still pumped up.. I 'was' very needle shy, but am getting a grip on that so that is a huge step for us... Thanks for your info.. So glad your hubby to be is doing sooooo much better at home.. Makes life good :-)
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We've been doing NxStage since August. Other than the work that inevitably comes along with doing home hemo, the only downside is her getting used to a 6 day treatment regimen; she was doing 4 in-center. I know my wife has never been more active and engaged with life in any time she's been dialyizing.
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im/we're ;) sure hoping for the same good results donster. Hubby does feel good most of the time now 'in center' so we sometimes wonder why we're putting this upon ourselfs.......but!!!!!!!!!!!! I think the long term outcome is better doing at home,and feel that we want to be more in control of this whole thing. Im really looking forward to getting started.. I think we have to wait till november now which makes me sort of sad because that means different techs in his center will be using his buttonholes and that bugs me.. We've tried to work around it, but it seems that this is the way they do it and their going to stick to it... boo!!!
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Tell your center that YOU want to do his sticks from now on, Sharon had her Neph write specific orders that I was the only one to do hers, including the hospital and so forth, no one gave us any trouble about it.......
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Thank you Silverhead.. Heres where i may not have the leverage "YET". We are having bo's (hubbys name) buttonholes established right now. On saturday, he starts with the blunt needles. Now, what's a possible issue is that my center sais they will not train me to canulate him (though they will train him) as they are not covered for family members ,and, we cant go strait to classes as theirs no opening yet. :-( I am going to go to the 'training' center and practice on the 'dummy' but no matter what, my center said that EVEN if i was trained elsewhere, they are not covered for "family etc" to canulate. I even asked that if i get a note (i probably shouldnt have mentioned this to her, just done it dang it) from his neph, would that clear them, and again she said no. I only wanted/needed it for temporary until we could get to class so i would be the only one using it and keeping it safe. Do you think that i should still try for the Neph aproval or will that be pushing buttons?? I did get to wear the 'tech' coat and face shield today though..but i think thats some new laws that have come out for observers..lol I was quite proud of myself though, as i have become the 'gofer' coffie, burritos, etc for some of the patients :-) , and now look like i have two jobs.. helper, and tech..lol
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That is the dumbest thing I have ever heard! :rant; I was trained to do hubby's access once the buttonholes were established. he did not want to do it. Since we have been home he has done it several times but prefers me doing it. That is just plain crazy that they won't train you. Could you offer to sign a release?
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I asked about the reliese as well but i think she was on a roll for "NO's"!!! <--- (really i do) Im trying to figure out besides the charge nurse, who would i ask about this. It sort of boiled down that the 'center' were we're going for training eventually, is the only one cleared to train.. They're happy with my motivation, but between me and them, we dont seem to get our center to budge. Im so POed but dont know for sure how to handle it diplomaticaly and get what i want.
hum,, just got to thinking... geesh, since it's RAI i should go directly to the head office and see where i get.. dang to late tonight, but on schedule for tomorrow...
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I also do Nxstage at home..... and do everything my self..... no problems...... I like doing my 4 hours when I go to sleep..... makes the time pass quickly..... I am still working on Nocturnal...... that will help alot....
lots of good info here.... this site has been a great support for me and a great learning place.......
Do what you want when you want......... I like life that way....
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They sure aren't making it easy for you!
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nope, not too easy..which is extra tough beings im having to push for something i REALLY dont want to do..lol Well, you know what i mean, i want to , but fear it big time. But, i did get some mabie good news today. The head lady at our nxStage training center is contacting hubbys neph, and going to ask for a referal to have ME stick him. We'll see. Im thinking they may have me come to that center for that part of the training first, go back to his center once trained until we can start home D training back at that center..lol..........We shall see :-) Sure is good to hear from ya all!!! Seems i need constant encouragement to get over this needle thing i got.. It's working though :-)
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I'm glad! That is good news. Ya know, I jumped in with both feet and then saw the big picture and was rather freaked out. . . but currently it is going well. It just becomes part of the daily process and less freakly (like everything) as you get use to it. :-*
this site has been so helpful for both me and hub as we realize that we aren't the only ones doing this and others make mistakes too!
You'll get use to the needle sticks and how that the buttonholes are firmly established, it really is pretty easy. For a while I doubted that it would ever be easy!
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thanks lillinny :) Ya know, i am so motivated to get started RIGHT NOW and yet so worried that by the time i get started, im going to have less motivation and therefore, more fearful once again. I think im going to have to print out all the info i've recieved so as to be able to freshen it up my knowlidge once it gets closer.. wat happened with the "referal" situation is,,,,,,well it's not going to happen. :( What we did solve though is that toward the end of Nov, we will do hub's regular treatment at thier center and they will train me to cannulate then. Then, I'll be well versed in that when i start the home dialysis machine training. I also asked the other lady at our center how her buttonhole's were doing now that various techs are canulating. She said WONDERFUL so that gave me at least some confidence. Not happy, but feeling a bit better at least. Im sooooooo glad its going well for you. I LOVE hearing everything, so fill me in to everything you feel up to writing...
tyefly... when you say you do everything yourself, your saying 'to' yourself?? I tell ya, i have huge admiration for ALL of you here doing it 'to' or 'for' someone. this is an amazing bunch of people for sure. Im so glad im heading in this direction at least. Never would have happened without ALL the info here.
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Hi, boswife............ had a few positive thoughts I wanted to share with you! First of all, the online call center for NxState is WONDERFUL. I cannot tell you how great they are. They always immediately understand the problem and walk you thru resolving it at your own pace. There is NEVER a feeling that they are rushing you or that you are dumb (even when the question may be VERY dumb)! I have called them numerous times over the last few months and every experience has been great. So many times you call a 'help line' and they are clueless, impatient, and rushed. Such is not the case with NxStage!
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thanks so much lillinny.. I need all the incouragement and reality's of this i can get :-) We talked to hubbys neph today (appt) and he is very happy that we are going for this. He sais that with my grate support <pats self on back..hehe> he should do great. He told us of the 'stages' you go through ie.. elated, learning, then the reality..or something like that, and i told him i have learned so much from IHD.com and others doing it that im pretty sure i got the gist and am prepared for that getting over the hump stage. I admit i fear the 'reality' part of it lol..... the humdrum everyday ..every dang day ::) of it,, but if it's going to give him a better life, im up for it.. (yeah, i say that NOW...ha) He also assured me that if we have to come back incenter, its not the worst thing in the world and dont feel bad.
So, anytime you want to through any info, good or bad, im loving hearing!!
thanks again.
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Hi! Yes, we went thru much the same. Felt like we were jumping one hurdle after another (shunt in neck, fistula, training) and that once we were done with that - life as we once knew it would be back and everything would be ducky. Well......... then realization hit that we do this 6x a week and it isn't a quick/easy process. But have overcome that (seriously!) and it is getting to be more routine. He feels much better than at center and isn't dizzy and crampy now.
This site has been a godsend for both he and me. I print out various posts of interest and he reads them and it has helped him realize that he ain't alone! :bandance; It helps me realize that when I make a really silly 'oops' that other have done it before me. And, things are getting so much easier! Every now and then get an alarm that we can't resolve (about 1x a month) and we terminate treatment early. Also got the organizational stuff (ordering supplies from the 3 vendors) has fallen into place as well as storage.
Take care and hang in there.
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This is so encouraging to read how everyone says they FINALLY think it is second nature to do. We have not started yet, and I was wondering what I was getting into when I said I would opt to do this at home. I hate needles and having to stick anyone. But if it keeps my "soulmate" around longer, I am ready do give anything a try!
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Yes I do everything myself.....wouldn't have it anyother way...... except.... if someone wants to help carry boxes up stairs......LOL
I believe anyone can do just about anything if they really want to.... I really wanted to continue to go places when I want.....that was my motivation...... I have done well......you will do well too.......there are several tricks to getting around problems..... many of us have some up our sleeves....
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This is all just increadably interesting and boosting.. I read each and every one to hubby as well and it has encouraged us both. We did have our pre class and signed papers yesterday saying we're ready to go and settled on how the route for us will be. I get (ha!) to start needling in about two-three weeks. They will transfer us to their unit which is 1/2 hour away vs 4 min :( ) then after about 3 weeks of canulating during his regular 3x a week sessions, they should have an opening for us to start the 2-3 week class on the machine where i'll be doing it all.. <picture me sweating about now..lol> I know i'll get it, but sometimes i really fear that my craphead anxiety will get the best of me and block my brain.. So far, im feeling very at ease about it so im hoping to breeze through it. I so very much appreciate hearing of experiences here. I cant thank you enough!!your like :angel; 's
ANd.. PVUgrad, do you have training in the makings?? It'll be fun to hear of how your doing too.. It's a huge step for us, and i cant even begin to say how much i've grown from reading here. This is a great thread, and hopw you got some good out of it too. ;)
And tyefly, what a brave woman you are. You make me proud of your gumption and i will think of you when i am feeling whimpy about carring this through. I do know and believe that it is my "want to's" that will make it happen. I've overcome the 'watching' of the canulating which i thought would never happen, and that was huge. Im one who once im set in motion, i will see it through, even if it kills me..lol Hubby is unbelieveably happy about it so cant back out now is the hugest part of it. I want him happy and and as feeling good as he can, so,,, here we go!!
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Hey Boswife,
Hubby just got his fistula put in about a month ago. So I guess it will be another 3 or 4 months? his function is down to 12% with his creatinine at 5.5. Which doesn't sound bad compared to some of the other stories I have been reading. He held out for 5 years at 20%, until he got a sulfa drug for a UTI. :stressed;
Get this. They is no one to train us here in Augusta, GA! So we have to cross over into South Carolina. That will be about an hour each way. >:(
I just wish we had all of this behind us.... :pray;
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hi PVUgrad , and oh brother!! I certainly dont blaim you for wishing this was all behind you.. i think it's going to be a pain to go 1/2 an hour to and from our training for nxStage, vs 3 min to dialysis much less your HOUR EACH way >:( . I too wish this part was behind us.. I have my fears of it, but thanks to friends here, im 'putten on my big girl pants' hehe and toughening up.. DAng it, im going to get back with you cause i have more to say..but hubby calling...
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ok back PVUgrad, so you havent started dialysis at all yet?? I was very sad when i heard how your hubby had held his position for so long and then the sulfa drug got him.. Thats similar to our situation and i am still in denial with my hubby if he wont 'bounce back' and not need D at all. Beings hes been on now for 14mo, im guessing he's not bouncing back, though his #'s are always good. I think your so brave diving right into NxStage. WE wanted to after a few monts in center, but i was way too uncomfortable at that time to even go through training. Hole different story now. Im so ready even though our experience in center has been really good and we'll miss them actually. I will be posting my experience (oh yeah) and hopfully it will be encouraging to someone else. I know that the only way we're even attempting this is due to those on here who are offering they're experience to me. All the best.. Hopfully, you'll not even need that fistula for a while, but great your getting it ready.. Oh yea, hubby got his 3 days before he was put on D, so since it wasnt ready, he had to have the neck cath.. you DONT want that if you can avoid it so your doing the right thing..
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I suppose the reason we (me) have decided to try the D at home is mainly because of my husband's others problems. Since he is confined to a wheelchair and can not transfer, it would be just easier to do everything here at home. Then I don't have to get both me and him dressed to go, but do everything in my PJs. ;)
Plus he already has fatigue pretty bad from his MS, so doing the D in center would just finish him off... :(
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I surly hope that this dialysis will give him a needed lift. Have you asked if it could be possible that you get trained at home?? I mean they do a home visit, seems that they could *possibly* have something like that for special needs like yours. That would be amazing for you.. I hope things work out for you without too much stress. it's hard on the both of you..
blessings to you both
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Great thought BOS, however I highly doubt it since they don't have anyone in this area of Georgia for training in center. That is why we either have to drive to ATL, 2 hours, or over to South Carolina, an hour.
But maybe his body will say "I'll show you for putting in that AV fistula. I just hold out here at 12% for another couple of years." ;)
Are you in charge of the home D when you start, or will you be just assisting your husband, as in 2 heads are better than one?
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my hubby bo held out a long time and who knows, mabie yours will get some bounce back, ya just dont know. and, I the needle phobe :o will be doing his cannulating, WE will be doing the set up and take down of the machines, and i will do the button pushing at least for a while. We will both learn, and hubby figuring he'll give the 'sticking' a shot in time, so we shall see. :2thumbsup;