I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rerun on February 05, 2006, 09:11:27 PM
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Sara,
You may want to look into HOME hemodialysis. You are so caring and a "take charge" kind of woman, I think you and Joe would really do well with it.
You need to ask if Home dialysis is an option in your area. I did home dialysis 20 years ago when the machines were huge and nothing was computerized. I don't do it now because I'm divorced and I have no one to help. Plus, my home turned into a hospital, and I didn't like that.
There are deffinate pros about having home dialysis. You are Joe's nurse. They train you. You are on your own schedule. You set up the machine so you know it is right. He can have ALL the visitors he wants. :D
Just a suggestion~ ;)
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That is a good idea in fact I would do it if I had my own house but unfortunately we live an apartment. I stick my own needles and that is the hardest part. Prepping the machine is easy.
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Great suggestion, Rerun. Thanks for thinking of us! I will definitely ask the doctor about this.
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I'm on Home Haemo (got the machine in Nov'05) And I do it on my own, as my wife is partly disabled and does a full time
job (as a teacher, so she gets heaps of digs about the 'full-time' bit :) ). I have a Fresenius 4008B and am quite happy with,
altho the heater went just before New Year and the Heparin pump went last week. BUt hte tech was out next day to fix em!
We are very lucky here in Queensland (and Victoria), as we have nocturnal haemo too, & I have just signed all the forms to
go on it! Only Canada & Australia do nocturnal, that I know of. You end up getting more haemo, more efficient use out
of the machine & the dialyser, plus all your daytime free...for work :( ...or pleasure :)
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Did I understand you in one of your posts that you do daily dialysis? How many hours a day? Everyday?
I have a friend on Home Hemodialysis and she was going to try the nocturnal dialysis, but her insurance wouldn't pay for it. :P They said it was experimental. How stupid.... she would be healthier and would cost them less in the long run. :-*
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Ah yes...I didn't say in the topic thing, that Nocturnal was still classed as "experimental", so I had to sign a
pile of consent forms :P :)
...and so anyone in Private Health Funds in OZ cannot get it thru the fund. I think they DO pay for
Home Haemo, but only of the 'daytime' variety & even then I believe the patients have to pay an
excess. As a dyed-in-the-wool socialist - :o sorry to shock my yankie friends there ;D - I believe in
National Health systems, paid from tax, a la U.K., France and the civilized countries ;D ;D
...so given the little I know about U.S. Health, I can undersatnd why the Ins. Co.s will not pay for it.
But I'm sure it will come around in time, once it's been going a while & the insurance companies
realise it may actually cost them less in the long run....
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Oops!! ::) I posted the big piccy instead of the face-only one.
Those big steins of beer are a thing of the past... :'( ;D
THis was @ my 50th in the back yard (I'll be 57 in March)
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Looks FUN! AHhhhhhhhhhhhh the good ol' days! ;D
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If you want to know about all things home dialysis then go to http://www.homedialysis.org especially the message board area here http://www.homedialysis.org/phpBB2/index.php
MESSAGE FROM ADMIN:
I think that homedialysis.org is a great site but it's unfortunate that they are afraid of a little competition from our site. I posted our link on there board and my entire message was DELETED. That's really sad because we are all suffering from this terrible disease and what's wrong if there are many sites for us to gather information. And to top it off their site is a speciality site "Home Dialysis" and ours is a "General Dialysis" site so I do not see why they are so paranoid that they would lose members to us.
- Epoman
Do you really think that they deleted your post because they were "paranoid that they would lose members"?
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Thanks Dialysta ;D Sometimes we forget all the information out there on the Net!
Do you do Home Hemodialysis? Please go to "Introduce Yourself" and tells us a little about your story. 8)
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Hello, this is Gus from http://www.dailyhemo.org ........ ::)
Sup everyone? Wanna go home and do dialysis with a NxStage? If so, lets do it! ;D
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Gus,
I did Home Hemo 18 years ago. Unless you can afford a home with a room just for dialysis, it sucks. My home turned into a hospital! Saline bags everywhere, syringes, tape, tubing, machine right next to my kitchen table.
Also, a lot of people live in apartments. I don't think you can convert water pipes and just install an HR unit on your own. ???
If I'm wrong, then please tell us about it. ;)
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I'm not Gus, but check out nxstage.com No plumbing involved and only weighs about 75 pounds. One long time user took his NxStage on a cruise, and one on vacation in his motor home.
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If you want to know about all things home dialysis then go to http://www.homedialysis.org especially the message board area here http://www.homedialysis.org/phpBB2/index.php
MESSAGE FROM ADMIN:
I think that homedialysis.org is a great site but it's unfortunate that they are afraid of a little competition from our site. I posted our link on there board and my entire message was DELETED. That's really sad because we are all suffering from this terrible disease and what's wrong if there are many sites for us to gather information. And to top it off their site is a speciality site "Home Dialysis" and ours is a "General Dialysis" site so I do not see why they are so paranoid that they would lose members to us.
- Epoman
Do you really think that they deleted your post because they were "paranoid that they would lose members"?
Yes, why else delete a link to another site related to dialysis?
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Having worked my way down the page thru various subjects/responses...
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(incidentally I have a mental block against posting on sites with those who
have 'passed on' still prominently displayed...some sort of deference maybe.
I don't know)
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...the more I read, the more Home Haemo seems to be so much better.
All these hassles with can u eat or not in your unit, 'going flat' (low b.p.)
and passing out before someone notices, etc.
...from the word 'go' at Home Haemo, we were encouraged to self-cannulate,
take our b.p, every 1/2 hour or so, note this and machine stats on a sheet,
details from which were transferred to the on-going sheets in your file (by you).
THe majority of 'beeps' from the machine were reset by us before the nurse made
it over to us.
WE had a great set of nurses, Apart from teaching you all the necessary
routines, they also practically said to ignore the dietician ;D and just try & be
sensible with fluid - "remember fluid on = fluid off! THe more on, the more
heart strain" ( not "stick to 500mils!!!" >:( ) ...and "eat what you're
not supposed to in the first hour of dialysis!" :)
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I'm sorry your apartment "turned into a hospital" ReRun.
Being in a house, with grown-up kids now gone (altho my son is back at the mo.,
until he leaves for U.K.), I'm able to use the 3rd bedroom as Study/Dx room.
Yeah, it's like the dx unit - boxes everywhere, machine, r.o., tundish...but that's O.K.
THe water purifier set up is outside the window, as are the air conditioning units
for my room (& we said what-the-hell, may as well do the 2nd bedroom too)
and my wife moans about the "aesthetic appearance" of the outside ::) ::)
But the hospital installs all your gear for you, works out where to run pipes etc.
I know they've done units (apartments), as I've heard 2 elderly ladies talking about
theirs when I was in hospital for one of the fistula ops. But then, that's us in Oz.
Over there I expect you have to organise that yourself... :( :o
My wife has asked me how I would go if we went back to Wales...I don't think
I'd be able to get it the same there either. IT depends on your local health authority
there & as far as I know, S.Wales ISN't one of the H.H.D. 'pioneers'. :(
...not even for daytime haemo.
'sides, I decided years ago, if ever I was trapped in one country because of health
or whatever, that Oz would be the choice! ;D
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Having worked my way down the page thru various subjects/responses...
-
(incidentally I have a mental block against posting on sites with those who
have 'passed on' still prominently displayed...some sort of deference maybe.
I don't know)
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I don't understand this statement are you saying you don't post at sites that have memorials for members who have passed? Is that what you mean?
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Ah, I see..O.K. I didn't mean tribute ones, I just meant 'ordinary' posts, where
these people have posted....they're sort of there, but we know they're not,
if you see what I mean. AS i often tend to be flippant in my responses, I feel
if I don't post anything new on that topic, then I can't be um..I dunno....
'accused' or 'guilty' of anything.
....Yeah, it does kinda restrict my postings eh? :-\
right...I'm whipping over to the Humor section, Ep'...wann move the other one???
btw...were they easy enough to read....? I did make em small to slip in easy
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...and getting back on topic:-
someone sent me a personal e-mail today from the North of England
He has been not only doing home haemo, but _nocturnal_ for 23 years.
He didn't say if he's always used moisture censors ( I asked him in a big reply
- which unfortunately got zapped, so I ended up sending a shorter one),
because that was the only way our unit could get nocturnal past the ethics
committee & other lip-pursers of the official variety.
HE has to tavel 100m to Manchester for a check-up twice a year & the renal
staff are always amazed at how healthy he is. He does 3 x 8.
Perhaps if they investigated further, they would get their own scheme going...
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Ah, I see..O.K. I didn't mean tribute ones, I just meant 'ordinary' posts, where
these people have posted....they're sort of there, but we know they're not,
if you see what I mean. AS i often tend to be flippant in my responses, I feel
if I don't post anything new on that topic, then I can't be um..I dunno....
'accused' or 'guilty' of anything.
....Yeah, it does kinda restrict my postings eh? :-\
right...I'm whipping over to the Humor section, Ep'...wann move the other one???
btw...were they easy enough to read....? I did make em small to slip in easy
Ahh so you said:
"incidentally I have a mental block against posting on sites with those who
have 'passed on' still prominently displayed...some sort of deference maybe.
I don't know"
But you meant:
"incidentally I have a mental block against posting in threads with those who
have 'passed on' still prominently displayed...some sort of deference maybe.
I don't know"
Now I understand. As for the humor post, yeah I could read they were good. And yeah I'll move the thread to the proper section.
- Epoman