I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: boswife on February 10, 2010, 07:04:17 PM
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Seems like for a week or two, the social worker at the center was almost 'pushing' for us to do home dialysis, or PD or anything outside of the center. At the time, we were even too new at it to even think about it, we were just trying to adjust to dialysis at all. we wondered then, and now reflecting, i wonder what the motive?? Just being helpful?? or more money?? hum, any suggestions..
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Which country are you in? Different countries have different policies; you haven't set your location in your profile.
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Hi, to answer you,, im in USA,,,,,california state :-) Thought i just added it to profile but dont see it..but do see it on that stuff at the bottom of my posts...
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I don't think the reimbursement is that much better for home. It's the medical results that usually have people pushing for home dialysis. Both PD and home hemo offer a lot more freedom from the fluid and diet restrictions, which make it much easier for a patient to stay healthy. They also offer a lot more freedom in terms of schedule. More frequent home hemo has much better results than standard in-center. If you aren't ready to deal with doing treatments yourself, then it's perfectly okay to turn the social worker down. Just keep it in mind for when you get further along.
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I don't think the reimbursement is that much better for home.
On the contrary, the reimbursement is definitely lower.
Because to run a center, they need to be reimbursed for all the operating costs: Janitor, electricity, water, secretarial staff, etc. Otherwise the center couldn't remain open.
Whereas if you dialyze at home, you're not charging Medicare or your insurer for your electric bill. The "operating costs" of your home are paid out of pocket by you.
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i think im understanding that with us doing home dialysis, that would open up another space for them to make money but arnt most of the dialysis patients on some sort of "help" too? I mean we're just on medicare so other than that i'd figure they would want all the people they could get.
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boswife, what part of California do you live in? I am in Riverside, southern Ca.
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Over here (NZ) the focus is heavily on getting people to do D at home one way or another - if they are capable. So you would not have the choice of staying in centre just because you liked it better. In centre is only for those who cannot do it at home. The reason is that our system constantly tries to save the taxpayer money and home dialysis is waaaaaaaaayyyyyyyy cheaper than in centre. My renal nurse also said they would like it to be the norm to start on PD if it's possible, and then move to haemo when that nolonger works. I don't know how the system works in America, but I think you are lucky to be in a place where they are talking to you about all the options. A lot of people are only told about in centre.
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Most people feel better on home dialysis as well whether it is PD or hemo. You can set your own schedule and there is no travel involved to a center!! It is cheaper too!!
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Regarding PD - to me, being attached to a machine for 9 hours every singe day sounds incredibly depressing. How does one actually have a life when more than a 3rd of it is spent attached to a machine? Why does it take so long to be attached to the machine? Is it true that with home hemo, you can spend considerably less time attached to a machine? I am still pre-D, hoping to be that way for a long time, and have no idea what I'm going to do when the time comes. I know I will have problems with the food restrictions, since I can't follow them now. But, I think I'd have more problems living life attached to a machine 9 hours a day, 7 days a week. I think that would just make me want to give up and call it good. Can someone please explain to me how one still has a life when so much of it is spent attached to a machine? (sorry that I keep using that phrase, but this is how I'm viewing my future and frankly, it both scares and depresses me. :( )
KarenInWA
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Hanify, I won't question what you say about finances or which has been easier for you. I will say that from what I know, if you are in stage iii or iv you are sent (well, requested to go) to a class that explains all modes of dialysis and transplants and shown advantages and disadvantages for all along with what the treatments entail and what. The classes was presented by educators who were nurses, dietitians, social workers, etc. It was very informative. If you are already past the point where you need immediate treatment, I assume you would go into a hospital. I had the advantage of having my first week of dialysis in a (the US #1 hospital) hospital simply because I was a wuzz. There you were given the treatment and consultation with dialysis nurses and social workers that covered much of the same information and help with selecting a center if that was what you needed.
So Bernie, my love, wanna move to Houston?
And Karen, my option (although there was no option since you can do hemo only if you have someone living with you who'll also train) was 4 hours three days per week or at home fewer hours but every day. And it is scary and depressing but only from time to time. I've been doing it 9 months now and this is the first really serious depression I've encountered since starting it. And it may have been precipitated by other factors.
Now, what I will say about finances is that I've paid dearly for years for other people's medicare and medicade, and I pay dearly now for a cadilac version (per Obama people) of enhance insurance. Until there are some alterations to current policies, I'll continue to seek the best and most completent care available for ME.
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For Karen in WA.....I have been on Pd for 3 years and it is far better than in-clinic hemo. I have done both. The fact is that on the cycler, you hook up at bedtime and sleep the night away, then unhook in the morning. No lost time in your day and the food and fluid restrictions are much less and it is gentler on the body than in-centre hemo.
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For you....
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It depends on the person what type of dialysis is best for them. For some it is PD for others it is hemo. Some people don't want the responsibility of doing dialysis at home and being reminded of it every day. Others do not have the option of doing it at home for many reasons. On the PD cycler or nocturnal home hemo you hook up to the machine at bedtime and do your dialysis while you are asleep. Others don't want or can't sleep hooked to a machine so they choose daily dialysis if they do it at home. It is an individual choice and people should be allowed to do whatever type of dialysis works best for them.
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I don't sleep 9 hours a day, so having to be hooked to a machine for that long a day would get in the way of my life. I rarely get to sleep 9 hours a day....
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Generally speaking, I think PD is probably a little more profitable for centers but I think most centers that push PD do so becuase it's not complicated to learn and the daily therapy is better for you. PD worked great for me prior to my transplant, I wasn't a big fan of the PD cath and I was really anal about my treatments to prevent peritonitis but I felt better and it allowed me to do my treatments on my schedule. I did manual exchanges 3-4 times daily. I never tried the cycler on PD, but I've met many that use the cycler and love it.
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Dan, no one ever explained "options" to me. I'm jellious :rofl; :rofl; :rofl; Woke up in the hospital, in a stupor, was told I was lucky to be alive, my back and legs were "messed up" and I'd probably never walk again, and oh yeah your kidneys failed, we put a cath in your chest on the left side and an IV port in your right. I probably said, "ok" and went back to sleep Dialysis started (I don'even remember, have ask my wife..the pain killers were that good) the next day I think. Weeks later when I finally escaped from the hospital, I started in center. A few weeks later my Neph explained to me the "options" and why some like PD would not work for me.
I don't sleep well at night, combination of factors not all related to dialysis (e won't go into them now), so nocturnal or home dialysis while you sleep is not going to work for me. I get my sleep in blocks. Not everyone is like that, it works great for some.
Me, I'm still willing myself to grow a new kidney. So far it isn't working out. So, I am going to have a consut to see if a transplant might work for me, now that I have moved to an area where I am closer to a transplant center and have more support. If my "inards" aren't too messed up, who knows I might be able to get one....some day.
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I don't sleep 9 hours a day, so having to be hooked to a machine for that long a day would get in the way of my life. I rarely get to sleep 9 hours a day....
Once my kidneys got bad enough, I slept 10 or 11 hours a day whether I wanted to or not.
Do you watch tv at night before you go to bed? You could hook up then, and do a couple of hours during your favorite shows. I was on home D for over a year, and usually started in the evenings when I was likely to be watching tv anyhow.
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The 9 hours thing does take a bit of working out I have to say. But I'm not asleep for all that time - I read, play on my laptop etc. Some people have an extension that means they can wander around. PD is not just gentler for some - it's a fact that it is a gentler form of dilaysis and therefore much easier on your body than in centre hemo. Home hemo is fantastic too - but NZ doesn't support the nxstage, so my only option is to have a machine plumbed into my house. I won't be able to travel unless I organise a centre somewhrere. The worst thing about PD for me is that I can't swim anywhere I want. If they could find a way around that I'd be a very happy girl.
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It depends on the person what type of dialysis is best for them. For some it is PD for others it is hemo. Some people don't want the responsibility of doing dialysis at home and being reminded of it every day. Others do not have the option of doing it at home for many reasons.
I'm one of them.
They won't let me consider home hemo, because I'm single and I live alone. They won't let me do home hemo by myself.
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I just finished Nxstage training and so did my partner...( daughter Sara ) I trained for three weeks and two days.... she came in with me 4 total days..... They said as long as my partner knew what to do in case of emergency then it was my responsibility to learn and do everything ..... I really don't think that a person needs to have someone there to do home hemo...there are plenty of people out there that do it alone..... I do it all on my own..... but I am pretty independent....... there may be others that need to have a partner to make home hemo happen.....and thats ok too.... I think it just depends on the person who wants to do it..... If I am determined about something I usually make it happen....... one way or another.....
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I just finished Nxstage training and so did my partner...( daughter Sara ) I trained for three weeks and two days.... she came in with me 4 total days..... They said as long as my partner knew what to do in case of emergency then it was my responsibility to learn and do everything ..... I really don't think that a person needs to have someone there to do home hemo...there are plenty of people out there that do it alone..... I do it all on my own..... but I am pretty independent....... there may be others that need to have a partner to make home hemo happen.....and thats ok too.... I think it just depends on the person who wants to do it..... If I am determined about something I usually make it happen....... one way or another.....
:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup; for you tyefly. Keep up the good work and attitude. :bestwishes;
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My question here would be what would be the reason to encourage or discourage any mode of dialysis treatment other than what is best for the individual situation? There are obvious options for reasons. Good luck to all regardless of your choice of treatment methods (especially Bernie.... lol).
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My wife says PD at home was the best for her, but she can't do it anymore -- too much scaring. My wife did PD all by herself when she was 14. With PD there are no needles and you get to sleep through most of treatment. I guess a buttonholed nocturnal hemo person might say something similar. She has done them all (except nocturnal hemo) and there were reasons for doing each one at the time. I doubt she could have done home hemo in her dorm room (they didn't have NxStage back then anyway) when she was in college or in center hemo when she was in high school or in center hemo with a newborn baby to care for. There is a time and place for all types of dialysis.
Don't worry about their motivations. It all comes down to you, a machine, and some dialysate. Figure out which combination of that where works best for you.
In center thrice weekly hemodialysis people have the lowest survival rate. Some of that has to do with external factors that no one likes to talk about here because it might offend someone.
It is harder to switch dialysis modalities as you go along. The question is what comes after the catheter. After you get a PD port or a fistula you are pretty much committed. Its not that you can't switch, it is just harder. I think there are some medicare/insurance related issues with choosing home dialysis within a certain time frame from starting dialysis. I would say more, but I haven't researched it.
Great Britain/NHS has a goal to get 15% of their dialysis patients at home according to a press release from NxStage. I don't know if Medicare or DaVita have similar goals. A 30 seat dialysis center costs about $2,000,000 or more if you include all of the equipment. A NxStage machine costs about $27,000 and most of that probably goes to pay for its testing and development. Some Chinese factory could probably crank them out for a few hundred dollars some day if they aren't already. Baby Boomers, higher rates of high blood pressure, obesity and diabetes are all overloading the in-center system. There are many reasons society is pushing for home dialysis. I work for a construction company as an estimator that has built a few dialysis centers. The state regulation, approval and plumbing is very complicated. It is funny to me at least when I yank Jenn's machine out of the car and can turn any room with a power outlet and a window or sink into a 1 seat dialysis center.
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There are people (or maybe I'm the only one) who sleeps, sits or does anything for more than 4 hours. The four hour restrition is the worse thing about HEMO in center to me. If button holes don't hurt I am start requesting to get up and walk to the deli or something at the end of two. lol kinda. Needle, button hole seems to me less invasive than a hole your your stomach. Vanity say "you got a good fistula that isn't noticable, yea. and you don't want to have a big stomach'. Just issues like that. As far as in center mortality I have just three comments" Zach, Zach, Zach". And really, really, with the except of last couple of weeks problem, I enjoy, i NEED the humar interaction. I keep on saying, it is so individual. I'd never ever try and convince anyone to live as I live.
By the way, insane as it may be, I have 3 beds available in my house and offen sleep on all of them plus a sofa or two. Even last night a pillow on the floor.
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I really don't think that a person needs to have someone there to do home hemo...there are plenty of people out there that do it alone.....
How do you get on sticking the needles in by yourself Tyefly? Any problems?
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You could hook up then, and do a couple of hours during your favorite shows.was likely to be watching tv anyhow.
That's the way I do it. I prepare the machine around 7:30 (after Jeopardy), and then hook up around 9. My extension is long enough to enable me to watch TV in the den, or wander into the kitchen for snacks. I usually go to bed around 11, and I'm off the machine around 7:15 am. Any time you can do something while you sleep and then have all your days free is a good thing in my book!
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By the way, insane as it may be, I have 3 beds available in my house and offen sleep on all of them plus a sofa or two. Even last night a pillow on the floor.
Wow some washing load :rofl;
I am still undecided, as I watched my Dad go through PD for 8yrs and at the time, I thought to myself, nope I aint doing that, dont fancy all that extra fluid in me. But now after a month on Hemo, I am unsure as to what is best. Hemo to me is easier, though awkward having to travel to a unit and PD is not so awkward but you are prone to infections.
In the end my previous ops put paid to PD, so I am stuck with hemo, so I better get used to it.
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They are required by law to give you your options.
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and once they do give you your option I would hope that others in the same situation would respect your choice within those options.
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I really don't think that a person needs to have someone there to do home hemo...there are plenty of people out there that do it alone.....
How do you get on sticking the needles in by yourself Tyefly? Any problems?
I just stick them into the buttonhole and in the vein it goes.....flashes..... tape up and all done..... really not a big deal...... I thought it would be but it was not..... the first time I attempted to do it I could not find the vein..... but now I know what it feels like ....its kind of like a rubber band ..... it so easy....... really..... If I can do ANYONE can do it.......