I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Gus on May 29, 2006, 09:21:46 PM
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Was just wondering how many of you on this board do home hemodialysis or have done it before? How about those of you thinking about it?
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Hi Gus, I am in my first week of PD and i am experiencing some complications, when i first was told of PD, i could not wait to do it, now i am not too sure if i made the right decision, but i tell ya what, so far, it beats the heck out of going and getting poked with them damn needles, thats for darn sure.. Some dont have any complications but of course, i am always the exception, lol, and thats cool, just have to check out what they have for plans B, C, D and E lol, NEVER GONNA GIVE UP,
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Hi Gus, I am in my first week of PD and i am experiencing some complications, when i first was told of PD, i could not wait to do it, now i am not too sure if i made the right decision, but i tell ya what, so far, it beats the heck out of going and getting poked with them damn needles, thats for darn sure.. Some dont have any complications but of course, i am always the exception, lol, and thats cool, just have to check out what they have for plans B, C, D and E lol, NEVER GONNA GIVE UP,
Hi goofynina,
Has your clinic talked to you about other dialysis options? For example, hemodialysis at home and buttonhole technique? Anyway, PD is cool once you get used to it and that takes sometime, but if you encounter later that its not working well for you.... then you have other options like doing hemodialysis using buttonhole technique(painless needle sticking) What about a fistula, do you have one?
I never did PD before, though I wanted it and asked numerous times to give it to me my Doc denied my request, for the reason I have been diagnosed with PBS(Prune Belly Syndrome)....not enough muscles on the abdomen.
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Actually, with the complications i am having now, my PD staff is working on what is going to be best for me, they keep saying something about a cycler, which, thanks to this awesome website, i am more familiar with and i can go in with a little more knowledge about it, i am just not to fond of the idea of being hooked up for 9 hours, but we shall see what they come up with for me, probably a sawed off shot gun to put me out of my misery, lol, I will keep you posted..
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Actually, with the complications i am having now, my PD staff is working on what is going to be best for me, they keep saying something about a cycler, which, thanks to this awesome website, i am more familiar with and i can go in with a little more knowledge about it, i am just not to fond of the idea of being hooked up for 9 hours, but we shall see what they come up with for me, probably a sawed off shot gun to put me out of my misery, lol, I will keep you posted..
Whatever they find out what's best luck to you. Just remember that there's nowhere else like home.
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BREAKER BREAKER, THAT'S A GREAT BIG AAAAAMEN............ I am reading you loud and clear good buddy......(over) lol (sorry, my brother used to be a truck driver)
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BREAKER BREAKER, THAT'S A GREAT BIG AAAAAMEN............ I am reading you loud and clear good buddy......(over) lol (sorry, my brother used to be a truck driver)
:D
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As I've said before, I've done the home hemo and it was not for me. My home turned into a hospital. Now, I have a friend who has been doing home hemo for 18 years and she does fine, but her husband built her a room for just dialysis. When she is done, she closes the door and walks away until the next time.
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As I've said before, I've done the home hemo and it was not for me. My home turned into a hospital. Now, I have a friend who has been doing home hemo for 18 years and she does fine, but her husband built her a room for just dialysis. When she is done, she closes the door and walks away until the next time.
Which machine did you use? What made you change your mind? Was it space? Maintenance? Or the whole ordeal?...currently, I have a bedroom just reserved for that......its a 10x10x10 ...... for the Nxstage nothing else was needed but only the closet to store some supplies. In the next month or so NxStage is sending out an addon module that produces dialysate in your own home....
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It was called "Drake Willock" (SP). It was the size of a refregerator! 50 gallon drums of dialisate in the basement, saline bags in the closet, the machine in the kitchen with the R/O unit and the dialysis "recliner" in the livingroom.
Don't get me wrong. I'm sure it is better now. Gosh that was 20 years ago.
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Rerun, you are showing your age!
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It was called "Drake Willock" (SP). It was the size of a refregerator! 50 gallon drums of dialisate in the basement, saline bags in the closet, the machine in the kitchen with the R/O unit and the dialysis "recliner" in the livingroom.
Don't get me wrong. I'm sure it is better now. Gosh that was 20 years ago.
Drake Willock 20 years ago? ??? ......its a very very old machine...from mid 1960s
http://www.homedialysis.org/v1/equipment/images/museum/lg_drake-willock7.jpg
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Mine looked a little different than that, but you get the main idea. :D
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Hi Gus,
WELCOME! :) I have read your post from another site and was happy to see you here. My husband, Len is on home hemodialysis. We started in April of 03. We use the Fresenius 2008H and have the RO in a closet, our daughters old bedroom has become our clinic. We have spoke to NxStage and have been offered the chance to switch, only problem is the clinic that has it is about 100 miles away. They say since we already do home hemo that our training wouldn't take as long. I just worry about labs and monthly clinic, driving to and from Washington, DC takes it toll on me.
We do want to go and see the NxStage machine because it would give us the opportunity to travel and I like the idea that it doesn't take long to setup and no bicarb or acid. Sounds too good to be true.
I really have some questions for you since you have been using NxStage for a while now. What kind of access do you have? How often do you dialyze? Have you had maintenance problems with the NxStage? How often do you have labs drawn? How often do you go to clinic? What kidney do you use on NxStage? How often do you get supplies, and is there special storage requirements? I have many more and really hope you could answer. Thanks in advance.
WillieandWinnie
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Hi Gus,
WELCOME! :) I have read your post from another site and was happy to see you here. My husband, Len is on home hemodialysis. We started in April of 03. We use the Fresenius 2008H and have the RO in a closet, our daughters old bedroom has become our clinic. We have spoke to NxStage and have been offered the chance to switch, only problem is the clinic that has it is about 100 miles away. They say since we already do home hemo that our training wouldn't take as long. I just worry about labs and monthly clinic, driving to and from Washington, DC takes it toll on me.
That's very nice that you can switch, and the 100miles is not too bad really but perhaps you can have the blood drawn locally? Will you have to switch Doctors as well? If not, maybe you can have the blood drawn locally? training on NxStage took me 17 days so really doesn't take long. Btw, do you currently do daily-short dialysis with the 2008H?
We do want to go and see the NxStage machine because it would give us the opportunity to travel and I like the idea that it doesn't take long to setup and no bicarb or acid. Sounds too good to be true.
Oh yes, setup time is very short, 18 minutes for me........and now with the addon module coming soon it will not need so much storage space for dialysate....dialysate will be created in your own home!
I really have some questions for you since you have been using NxStage for a while now. What kind of access do you have?
I have a short fistula on my right arm, was placed in 1984........for needling, currently using buttonhole method
How often do you dialyze?
6x a week for 2.5 -2.7 hours
Have you had maintenance problems with the NxStage?
On my first year at home once only. All I did is report to NxStage and they send me a replacement in less than 24 hours......
How often do you have labs drawn?
Once a month
How often do you go to clinic?
Once a month
What kidney do you use on NxStage?
NxStage brand, Its a cartridge will all lines and kidney embedded, all you do is slide it in....pic below...
http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27&func=detail&id=9
How often do you get supplies, and is there special storage requirements?
I get supplies once a month and I use the closet to store the items. I also have some items in the garage. However, with the new addon module coming soon I won't need much storage.
I have many more and really hope you could answer. Thanks in advance.
Sure, am here to help you decide... :) .....you may also visit my photo gallery...link below
http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27&func=viewcategory&catid=1
WillieandWinnie
Rerun@ Give home dialysis another try...... ;)
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Hi Gus,
That's very nice that you can switch, and the 100miles is not too bad really but perhaps you can have the blood drawn locally? Will you have to switch Doctors as well? If not, maybe you can have the blood drawn locally? training on NxStage took me 17 days so really doesn't take long. Btw, do you currently do daily-short dialysis with the 2008H? [/b]
Yes, we will have to switch doctor, clinic, lab. Everything. We do 3 times a week for 3 hours. I try to get a every other day in about once a month if I have the supplies.
Oh yes, setup time is very short, 18 minutes for me........and now with the add on module coming soon it will not need so much storage space for dialysate....dialysate will be created in your own home![/b]
Are you getting and RO?
I really have some questions for you since you have been using NxStage for a while now. What kind of access do you have?
I have a short fistula on my right arm, was placed in 1984........for needling, currently using buttonhole method[/b]
I keep reading about the bottonhole technique, still not sure I understand it!!
I get supplies once a month and I use the closet to store the items. I also have some items in the garage. However, with the new add on module coming soon I won't need much storage.
What add on module?
Sure, am here to help you decide... :) .....you may also visit my photo gallery...link below[/b]
http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27&func=viewcategory&catid=1
Gus, thanks for the links to your site, it's going to help me a lot when we see this up close.
WillieandWinnie
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That's very nice that you can switch, and the 100miles is not too bad really but perhaps you can have the blood drawn locally? Will you have to switch Doctors as well? If not, maybe you can have the blood drawn locally? training on NxStage took me 17 days so really doesn't take long. Btw, do you currently do daily-short dialysis with the 2008H?
Yes, we will have to switch doctor, clinic, lab. Everything. We do 3 times a week for 3 hours. I try to get a every other day in about once a month if I have the supplies.
Same happened to me here, switched Doctor and clinic......but keep in mind that switching to NxStage means you will do it everyday for short periods...... depending on weight and labs. For example, I do 6x a week from 2.5-2.7 hours......sounds like alot but heck, its making me feel healthy...basicly, its keep toxic and fluid buildup ar bay. Blood pressure is normal now....you won't feel that dragged down feeling from 3x a week............I also can see there's another option I can see in your hands right now......its called Nocturnal.......you can try and see how Nocturnal works out for you 3x a week.....basicly you dialyze while sleeping...pump speed and UFR are set low....a very gentle dialysis....alot better than 3 hours.......you can eat more and drink more....talk to your clinic about this
Oh yes, setup time is very short, 18 minutes for me........and now with the add on module coming soon it will not need so much storage space for dialysate....dialysate will be created in your own home!
Are you getting and RO?
No R.O. needed here..........just a receptable outlet for power and a drain
I really have some questions for you since you have been using NxStage for a while now. What kind of access do you have?
I have a short fistula on my right arm, was placed in 1984........for needling, currently using buttonhole method
I keep reading about the bottonhole technique, still not sure I understand it!!
You can read more about it here..... http://www.homedialysis.org/v1/types/buttonhole.shtml
Also, look at this video by Bill Pecking..... http://www.worldfamousedit.com/kidney/Needles_0517.mov .......basicly, its like inserting earings
I get supplies once a month and I use the closet to store the items. I also have some items in the garage. However, with the new add on module coming soon I won't need much storage.
What add on module?
Its a device the size of a standard end table that will produce ultra-pure dialysate in your own home.....read more about it here..
http://phx.corporate-ir.net/phoenix.zhtml?c=142059&p=irol-newsArticle&ID=842399&highlight=
Sure, am here to help you decide... :) .....you may also visit my photo gallery...link below[/b]
http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27&func=viewcategory&catid=1
Gus, thanks for the links to your site, it's going to help me a lot when we see this up close.
WillieandWinnie
Your welcomed!
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Hi Gus I have been on home hemo now for a year using the button hole needles my machine is a Gambro AK95 which has the RO unit on the side of it I have a room in the basment for all the larger supplies and a cabinet in the bedroom for all the small stuff if you would like a pic of the machine add me to MSN messenger Len_Burrows or pzn69@hotmail.com
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Hi Gus I have been on home hemo now for a year using the button hole needles my machine is a Gambro AK95 which has the RO unit on the side of it I have a room in the basment for all the larger supplies and a cabinet in the bedroom for all the small stuff if you would like a pic of the machine add me to MSN messenger Len_Burrows or pzn69@hotmail.com
Okay Len, I added you........ :)
Here's your picture.......killer blue sports car! ;D
(http://images5.pictiger.com/thumbs/12/f85589bf6ce0d58bae6a69b7e9ed0f12.th.jpg) (http://server5.pictiger.com/img/337808/picture-hosting/len-2.php)
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Been a home hemo patient for over 3 years. Works great for me doing 4hrs ,3 times per week. Work full time and vol at fire hall despite my dialysis. Can't speak for anyone else but home hemo works well for me.
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Hi Gus I have been on home hemo now for a year using the button hole needles my machine is a Gambro AK95 which has the RO unit on the side of it I have a room in the basment for all the larger supplies and a cabinet in the bedroom for all the small stuff if you would like a pic of the machine add me to MSN messenger Len_Burrows or pzn69@hotmail.com
Okay Len, I added you........ :)
Here's your picture.......killer blue sports car! ;D
(http://images5.pictiger.com/thumbs/12/f85589bf6ce0d58bae6a69b7e9ed0f12.th.jpg) (http://server5.pictiger.com/img/337808/picture-hosting/len-2.php)
I hope you had permission from him, before you posted his picture. ??? and next time attach the picture, I don't like Link pictures, because links die, but if you attach it, the picture will be here for as long as this site is online.
- Epoman
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Hi Gus I have been on home hemo now for a year using the button hole needles my machine is a Gambro AK95 which has the RO unit on the side of it I have a room in the basment for all the larger supplies and a cabinet in the bedroom for all the small stuff if you would like a pic of the machine add me to MSN messenger Len_Burrows or pzn69@hotmail.com
Okay Len, I added you........ :)
Here's your picture.......killer blue sports car! ;D
(http://images5.pictiger.com/thumbs/12/f85589bf6ce0d58bae6a69b7e9ed0f12.th.jpg) (http://server5.pictiger.com/img/337808/picture-hosting/len-2.php)
I hope you had permission from him, before you posted his picture. ??? and next time attach the picture, I don't like Link pictures, because links die, but if you attach it, the picture will be here for as long as this site is online.
- Epoman
[/quote
Len an I had a great chat over MSN..... :) .....there's also a pic on my site's gallery at http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27
It was rather a huge picture....I had to optimize it with Photoshop.......
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Hi Gus I have been on home hemo now for a year using the button hole needles my machine is a Gambro AK95 which has the RO unit on the side of it I have a room in the basment for all the larger supplies and a cabinet in the bedroom for all the small stuff if you would like a pic of the machine add me to MSN messenger Len_Burrows or pzn69@hotmail.com
Okay Len, I added you........ :)
Here's your picture.......killer blue sports car! ;D
(http://images5.pictiger.com/thumbs/12/f85589bf6ce0d58bae6a69b7e9ed0f12.th.jpg) (http://server5.pictiger.com/img/337808/picture-hosting/len-2.php)
I hope you had permission from him, before you posted his picture. ??? and next time attach the picture, I don't like Link pictures, because links die, but if you attach it, the picture will be here for as long as this site is online.
- Epoman
[/quote
Len an I had a great chat over MSN..... :) .....there's also a pic on my site's gallery at http://dailyhemo.org/1//index.php?option=com_ponygallery&Itemid=27
It was rather a huge picture....I had to optimize it with Photoshop.......
Thank you.
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I don't think you have to "quote" everything. Instead of 1 picture now we have 4.
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Problem with having a picture on here ? ok I'll remove mine ((( sorry.)))
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Problem with having a picture on here ? ok I'll remove mine ((( sorry.)))
No, your Avatar picture is fine. You mean you didn't understand that the "quotes" had the picture of the dialysis machine by the bed 4 times? AND Epoman just asked us to minimize our pictures. Boy are you touchy. :-\
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Hi Everyone
I think I'm feeling guilty. We have been called about training on the NxStage system one. We would of been this clinics first to train. Only problem is I turned them down. My husband has a bunch of medical appointments, dentist today, dialysis and labs tomorrow, 50 mile trip Friday to take labs to clinic, 150 mile trip to DC for cardiologist on Monday, 50 miles for Clinic on Wednesday, and on 27th, 150 mile trip to DC to meet with transplant folks. In the middle somewhere, I need to order dialysis supplies and get a delivery, we need grocery's for cooking, clean laundry, the lawn needs mowed, the pets want fed and attention, Len's driver's license is about to expire and I'm sure the bill collectors would loved to be paid, which means a trip to the post office and then don't forget about prescriptions that need to be filled.
I'm really worried about this clinic being at least 2 1/2 hours away. I HATE driving in DC on a good day. But after the trip and then training and then driving home, added to everything else, I really don't know if I can do it. I'm getting older and it takes me days to recover from a one day trip there. I don't sleep real well since I spent 6 months at hospitals with Len, every little noise wakes me up. I'm starting to feel I'm letting him down by not jumpring on this opportunity so at least he could travel to see his family.
I'm sorry that this sounds like I feel sorry for myself, I really don't. I'm thankful for everyday I can spend with Len. Sometimes I just need to B---H. Thanks for letting me.
willieandwinnie
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Don't feel guilty. It takes two to do Home Hemo. Wait until it comes closer to you. If they want you that bad, they can come to your house and train.
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willieandwinnie@ Your not talking about Len from Canada are you?.....unless there's more Lens here... ;D
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No, we are not from Canada.
Southern Maryland
willieandwinnie
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I'm waiting for my center to get the nxstage machine. I am looking forward to having it at home but I'm also a little worried that it may be a little much for me at this time. I am the secondary caregiver for my elderly father and I work full time. I was figuring I had a room upstairs in my house for doing dialysis but now my son has just moved back home from FL. I'm hoping by the time my center gets the new machines my son will have his own place.
As far as my father is concerned I hope he will be more stable by then.
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It takes two to do Home Hemo.
2 to do hemo? :( ... I live by myself. My city is supposed to get home hemo and the nurse offered it to me. But I live on my own. Maybe she forgot? Well it is the kind that needs the plumbing altered and my subsidized-housing apartment manager will not allow that anyway :(
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I'm on home Hemo , also I live alone .I have been on it now for a year with no problems,you would need two dedicated plug ins and a water supply and a drain not that many changes needed ..
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I'm on home Hemo , also I live alone .I have been on it now for a year with no problems,you would need two dedicated plug ins and a water supply and a drain not that many changes needed ..
That is plenty to my apartment manager :( She wouldn't even let me pick the bigger bedroom to sleep in when I had my Nocturnal Hemo machine by my bed because she was my neighbour (worked out that way) and said she didnt want to hear my machine beep ever and wake her up. :( Just the way she is.