I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: tyefly on January 08, 2010, 01:29:02 PM
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I have been on D for three months now.... working on buttonholes.... I am in center three hours three times a week... thats 9 hours per week.... my clearances have been better than most and I feel better than I have felt in a couple of years..... I always said that when I started D I wanted to use Nxstage and do it at home.... I wanted to have the best D treatment to feel the best and be as healthy as I could ...... NOW..... I am re thinking.... If I go and start Nxstage training I will have to do Dialysis for 12.5 hours a week.... 2.5 each day .... I am only doing 9 hours now and my clearance are really really good...... my potassium and phos are great.... kt/v is great.... everything is great.... I feel good.... I am thinking why do I want to do more.... why would I want to spend more time on the machine..... What benefit would I get..... I am thinking that maybe I should wait until I need more D time when my clearance go down...... Am I not thinking correctly here.... Would I really feel that much better..... doing D every day.....with nxstage.... Everyone I know says they cant believe how well I look and how much better I am thinking.... LOL...... I feel like I am on caffeine all day now....LOL .... They are calling me wanting to know when I want to start training..... I am not sure what to do ......
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If you're happy doing in centre then stick with it! Sounds like it's working really well for you. Yay.
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Kathy, I think the biggest thing with NxStage is that you are not tied to someone else's schedule. If we want to dialyze at night we do, or in the morning, that, too. We can change the day we skip. It's more flexible than saying that we have to be at the center at a particular time.
Having said that, we do spend more hours on the machine at home than we would in center, but we then there isn't any travel time and we don't have to worry about getting to the center when the weather is bad.
We run at a slower speed that is gentler on the fistula, too.
Having said that, if you are happy doing what you are doing and it ain't broke, no need to fix it! :2thumbsup;
Aleta
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I have thought about that too..... I do want to travel... or at least get in the RV and go.... cant do that now.... my speed in only 350 for three hours..... I still need to get past the self cannulation..... I have not done that yet...... buttonholes still hurt..... and I am still trying to get the guts up to do it........ :rofl;
I am just full of excuses...... I think that maybe I dont even need D anymore...... :rofl; I feel too good.....
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Oh, no you don't. :boxing;
Stop that dangerous talk right this minute!
We know what happens when you go without dialysis now don't we? :bow;
In all honesty, though, Kathy, just take it one step at a time. Even if they are pressuring you to start training, remember it is YOUR life and YOUR treatment option.
Aleta
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ONLY KIDDING....... Yes its my news years resolution....... I must talk positive..... someday I will think that way too...... :yahoo;
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My first center was an hour's drive away, so switching to NxStage saved me money and time. I did feel much better on home - more energy, fewer fluid restrictions. I loved the freedom to change my scheduled day off whenever I felt like it. Doing it at home, with my friends over, my craft supplies in front of me, and none of the discomforts that come with in-center, like puking patients, or dementia patients yelling, or everyone sharing cold germs was so much better for me. Mentally, it became just a slightly boring chore that I did 5 days a week, like dishes or laundry. Dragging out of bed to go the center was like going for a root canal 3 times a week. I dreaded it.
Eventually, I had to switch back to in-center. ( My nxstage partner divorced me. ) I did well because I worked hard at it, but it was still an adjustment from the ease of the NxStage.
Regardless, in-center works well for many people. Some don't want to bring the mess home, nor do they want to do the work involved in running, cleaning and stocking for the NxStage. Do what works for you.
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I would kill for NxStage but the aussie govt had a bad experience with a very older type of machine similar to it and piont blank refuse to use it. i think there is only like 6 or so people here using it (under a trial and they are in a different state.) I'm demanding my Doc put me on the waiting list for any trials that come up. Infact i usually put my hand up for any trial..... that way just in case....
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I would say this...
Kathy, I think the biggest thing with NxStage is that you are not tied to someone else's schedule. If we want to dialyze at night we do, or in the morning, that, too. We can change the day we skip. It's more flexible than saying that we have to be at the center at a particular time.
Having said that, we do spend more hours on the machine at home than we would in center, but we then there isn't any travel time and we don't have to worry about getting to the center when the weather is bad.
We run at a slower speed that is gentler on the fistula, too.
Having said that, if you are happy doing what you are doing and it ain't broke, no need to fix it! :2thumbsup;
Aleta
and also this ...
My first center was an hour's drive away, so switching to NxStage saved me money and time. I did feel much better on home - more energy, fewer fluid restrictions. I loved the freedom to change my scheduled day off whenever I felt like it. Doing it at home, with my friends over, my craft supplies in front of me, and none of the discomforts that come with in-center, like puking patients, or dementia patients yelling, or everyone sharing cold germs was so much better for me. Mentally, it became just a slightly boring chore that I did 5 days a week, like dishes or laundry. Dragging out of bed to go the center was like going for a root canal 3 times a week. I dreaded it.
Eventually, I had to switch back to in-center. ( My nxstage partner divorced me. ) I did well because I worked hard at it, but it was still an adjustment from the ease of the NxStage.
Regardless, in-center works well for many people. Some don't want to bring the mess home, nor do they want to do the work involved in running, cleaning and stocking for the NxStage. Do what works for you.
.
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I switched to Nxstage from in center, as since I'm retired, I didn't want to be somewhere at someone else's becking (the center). We also had many very sick people there and was depressing - like looking at my future.
I was also at 3 hrs x 3 days. W/nxstage, I am at 1 hr 45 min x 5 and still have a KT/V at 3.15 w/normal ranges of labs (except creatinine & BUN). Have residual kidney function. I also like being w/my 2 basset hounds on the couch w/me.
Admittedly, I do miss my 4 days off from the machine. When I travel - I use the clinics - vacationing w/the 5 days does not appeal to me.
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I hope everyone realizes that some of us don't have the luxury of a choice. I tried to go "home" at first. Even thought about finding an old retired nurse to marry but decided the three times per week to clinic would be cheaper. Truthfully, it was their decision but I need some sense of value (if only in my mind).
I'm happy with center now as I made several friends there but down the road how I may feel. I'm thinking maybe when I can no longer drive or walk it might be time to quite. Could then make rr happy by saving taxpaper money anyway.
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Tyrefly I'm a great believer in the adage "if it ain't broke don't fix it" The fact that you feel uncertain about it now could indicate that perhaps home haemo is not for you at the moment. If you are feeling well and your lab readings are good, well then for the moment my advice would be not to change anything yet.
Even if you tell them you don't want home D training at the moment, you can still change your mind later.
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I hope everyone realizes that some of us don't have the luxury of a choice. I tried to go "home" at first. Even thought about finding an old retired nurse to marry but decided the three times per week to clinic would be cheaper. Truthfully, it was their decision but I need some sense of value (if only in my mind).
I'm happy with center now as I made several friends there but down the road how I may feel. I'm thinking maybe when I can no longer drive or walk it might be time to quite. Could then make rr happy by saving taxpaper money anyway.
Dan, I realize that it's not an option for all. I also understand that it's not the "right" choice for all. While Marvin and I think it's wonderful and it works for us, it is a lot to handle, too. Home hemo has its advantages, but it has disadvantages, too.
...and the part about your quitting if it got to the point where you could no longer drive, no longer walk, no longer be independent ... I would NOT like it if you chose to do this, but I would understand completely where you would be coming from. I think, in your shoes, I'd want a quality of life most of all.
...and the part about marrying an old retired nurse....Hell, Dan, find a young, rich nurse to marry. If you're going to do it, boy, do it all the way! :rofl; :rofl;
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I think everyone should evaluate it for themselves but the main reason in my mind - besides the travel (see recent posts on my blog) - it's just much safer. CKD5 is insidious.
You have to be in this game for the long term and dialyzing more - longer and more frequently - does the best job of keeping you healthy long term (aside from a transplant but it also keeps most prepared to live a long time with a transplant if it comes your way).
It is true that home dialysis can feel like a grind - nocturnal less so - but bottom line you have to dance even when the music sucks. But that's true incenter too and their music sucks more often.
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Yes Bill I am in pretty good shape right now.... still healthy and I am working on a living donor transplant.... we are a match.... and he is current doing the test to get approved.... I think he will be approved....takes awhile to do all the testing..... so I really think ( but nothing is for sure ) that I will transplant in the next few months...... I believe in the nxstage system and I know in the long run it would be the right thing for me as I need and want to travel..... Incenter has turned out to be much better than I thought.... but I have only done this for three months now.... still a newbie..... So I have a action plan..... I am going to stay in center to see about this transplant..... if it goes then I wont need Dialysis..... if it doesn't then I will start training with nxstage.... but the end summer I should be free of in center.........one way or the other.....
I have been very pleased with my care in center...... I am developing buttonholes and Have had the same person stick me from the beginning..... she even comes in on her days off to stick me...... I am lucky.... there are no rules at the center that you cant live with..... we are treated with alot of respect and they are very clean.... aseptic techniques are done very well.... we can have as many vistors as we want, we can eat anything we want, or drink... we all have our own TV and I love to use my computer there as well.... It really is a great place.... I am very pleased.......they really care....... I was very worried after reading how others were treated at there centers..... and was expecting the worst..... so for all you newbies out there.... not all centers are bad.... some are very nice....... I have alot of respect for my center.....
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Here in Massachusetts where I live,
going in center is always tricky in the winter. If there's a huge snowstorm, they won't plow the snow out of my apartment building's parking lot till it stops, and I simply won't be able to get to the dialysis center till the next day, most likely.
Whereas with home hemo, I can always do it regardless of the weather.
On the other hand, during the summer we usually get one or two power outages, which means that I would have to purchase an UPS for my NxStage if I wanted to dialyze when the electric power was off.