I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: jbeany on February 16, 2009, 04:58:17 PM
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My dialysis partner took the only job he's been able to find in this lousy economy - long distance trucking. My center won't support doing home dialysis without a partner, and there's no one else to do it with me, so in two weeks, I'm stuck back in-center. Even if I could badger my center into letting me try it solo, I already know my graft has scarred up so bad that I can't do my own sticks anymore. So it's back to being constantly tired, thirsty, and broke from buying gas to get to the closest center an hour away.
This sucks.
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Oh JB, I am so sorry to hear this for you.
xoxo
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Can't you find someone to come stick you? You know there has got to be someone out there. I'm so sorry JB!
:(
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jbeany, I'm so bummed for you. Wish I lived closer, I'd be happy to stick you....well happy isn't the right word, more like willing. :cuddle;
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what a bummer JB, I'm hoping there is someone out there to help :cuddle;
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That is not so good.
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Oh, that does not sound good. Is there any chance of doing nocturnal? :grouphug;
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Oh, no, JB! I feel so for you. Isn't there anyone else close by (friend, relative, retired nurse, etc.) who can step in and take over the "caregiver/partner" for you so you can stay on home hemo while your husband is on the road? Even if it's considered "temporary" until you can work something else out? Can you put out a plea to churches to see if there's someone in the medical field who would volunteer to help you out some?
Marvin and I would be devastated if he had to give up home hemo, and I can imagine that's how you feel. How close are you to the southeastern coast of NC? If I could, I would "double up" and be your partner, too.
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I'm in Michigan, petey, but thanks for the offer.
They don't offer nocturnal around here, or I'd try that.
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Sorry to here that JB. Wish there was another way. :grouphug;
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That sucks. A modern day Flowers for Algernon (http://en.wikipedia.org/wiki/Flowers_for_Algernon).
Are there any other dialyzors in your area? There is the Hana model (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/01/hana-maui-model-of-dialysis.html).
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I am so sorry. This stinks. I wish there was an easy solution. :cuddle;
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That sucks. A modern day Flowers for Algernon (http://en.wikipedia.org/wiki/Flowers_for_Algernon).
Are there any other dialyzors in your area? There is the Hana model (http://www.billpeckham.com/from_the_sharp_end_of_the/2009/01/hana-maui-model-of-dialysis.html).
I don't think there's anyone else close enough who would be capable of exchanging treatments. Most of the other home hemo patients went on it in part because the distance between centers around here, just like I did.
(That book gave me the creeps.)
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so sorry :'(
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:cuddle; Hugs JB I know how much you hate being incenter.
What about a family member/friend? District nursing service? I am surprised they are not trying harder to keep you home.
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Sorry JB, that really sucks! I don't know what I would do without my NxStage. If you can get past the sticks somehow, I have herd that some centers will approve to be home alone if you get a device like a Life Alert.
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I am so sorry JB, that's really bad news. I can't help but think that there must be someone willing to help you... I wish I could help. Is there no solution to this??
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Sorry to hear this JB, I wish there was a way you could continue :grouphug;
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Sory to hear JB, that sucks donkey ****'s!
That is one of the drawbacks of being alone I fear, no help. Wish there was someone close to you from here that you know could help you.
I forgot, did you have the buttonholes for dialysis? If not and you had those, would they allow you to continue at home? Or are they clueless about buttonholes?
Wish I could help, but the daily commute would be a b**** with airline flight's and rental car cost. ;D :urcrazy;
Hope incenter goes ok than the last.
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I have a graft, Chris - no buttonholes allowed.
I'm working on moving someplace closer to another center - my stepmother has offered to let me move into her place. If that goes thru, at least my drive time would only be about 15 minutes, instead of an hour.
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I hope you like your step-mom JB. 15 min drive compared to n hour would be better, but if you don't get along to well, that hour may seem a piece of cake.
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Ahh, but step-mom bought a condo in Arizona, and the house she's letting me move into is currently standing empty, and in this market, is completely unsaleable. She doesn't want to move back, so she's actually happy to have someone in the house to keep it up. She knows I'm on a no-budget budget, so she's not going to charge me rent. I'm moving from my dumpy little trailer by the highway to an beautiful A-frame house in the woods with a garage, a hot tub, its own pond and miles of walking trails. It's not a compensation for losing all the health and energy I've got on home hemo, but it's certainly a nice upgrade from the place I'm in now.
So yeah, I will get along with her quite well!
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Ahh, but step-mom bought a condo in Arizona, and the house she's letting me move into is currently standing empty, and in this market, is completely unsaleable. She doesn't want to move back, so she's actually happy to have someone in the house to keep it up. She knows I'm on a no-budget budget, so she's not going to charge me rent. I'm moving from my dumpy little trailer by the highway to an beautiful A-frame house in the woods with a garage, a hot tub, its own pond and miles of walking trails. It's not a compensation for losing all the health and energy I've got on home hemo, but it's certainly a nice upgrade from the place I'm in now.
So yeah, I will get along with her quite well!
Are there resources in the area around your MIL's house that might be able to drum up a helper? Move yourself and NxStage to the A-Frame?
Your helper could sit in the hot tub while you dialyze.
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Unfortunately, I haven't come up with anyone willing to put in the time yet. The friends I have capable of dealing with the blood and the needles don't have the time -they've got full time jobs and kids, or they run their own businesses, and work 80 hours a week as it is. The only friend I've got with enough time faints whenever she gets near a needle, and is a complete flake in an emergency situation, so she won't even consider trying it. (I've seen her panic over something as simple as a flat tire - I don't want to see what she does when my needle sites start spurting.) As the southerners say, "Bless her heart. . ")
I've only had a couple of days notice on all of this, so maybe something will come up in the future. If I do find enough help, I can always get the NxStage back, though - there's plenty of room at the house. There's a "playroom" set up in a second building that has heat and water, so it would be a great place to set up my very own dialysis center.
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Have you asked nursing students in the area?
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Have you asked nursing students in the area?
Great idea, Kit!
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A guy found a kidney on Craigslist (see News Articles) so maybe you could find someone to help...? Ya never know.
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Auugh! I got the keys to the house today. Now I know why she was so eager to have someone move in. When she left for the winter, which is turning out to be a permanent vacation in Arizona, she didn't pack or move much of anything. She's had the house on the market for a year, so I figured if would be nearly empty. Nope! It looks like she just walked out the door and left it. The closets are overflowing, the cupboards are stuffed full, the knickknacks are still all over, and even the fridge is still partly full. (Ewwwww!) There were still dishes in the sink. No wonder she couldn't sell it! I've got to pack her stuff and put it in storage before I can move in mine. I know part of her problem was it's half my dad's stuff, and she couldn't deal with it after he died. Hopefully, it will be easier for her if I have it already boxed up and labeled.
At any rate, my packing just doubled. I've already come to the conclusion that I own tooooooooooo much junk, just from boxing up the first of my things here at home!
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Awww JB - that sucks. Sounds like a lot of work. Does she mind if you sell her stuff? Or just don't tell her LOL.
Hope things get easier soon. xoxoxo
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Good luck with two houses full of junk! :grouphug;
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I'm very sorry to hear about all of this. it's great to have a house to use, but it sucks that you have to deal with all of the mess! :cuddle;
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I'm sorry about not being able to do NxStage, you were doing great on it. I'll pray that something comes up for you. In the meantime, enjoy the house!
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I had my first day in-center, at the center closest to the new house. It's a satellite center from my other clinic, so I get the same doc, dietitian, and social worker. It's tiny! 3 chairs in a room smaller than my new living room. Only 2 staff members at a time. There's some advantage there, though - no waiting for hook-ups, fewer people to spread cold germs, and it's really quiet. Good crew, too. I, of course, got to start out my first day back in the grind by shoveling out from 12 inches of snow that we got last night. I'm a 15 minute drive from the center, and it took me over an hour to get there - most of that time spent just trying to get a car out of the driveway. When I got there, the only nurse there introduced himself as Dave, and said the other nurse, Nancy would be there shortly. One of the 3 patients lived a few miles away, and was stuck, so Nancy had taken Dave's truck to go get her. Now that's personal service!
On the down side - I'm right back to that washed-out, crappy feeling I always got after in-center, and the weird taste is back in my mouth. Ugggh. On to my first weekend off D in ages, too. Time to freeze some grapes and try to stay away from the faucet.
On the up side, my step-mother tells me that the pond in my new front yard has its very own otter. That should be fun!
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An otter? How cool!
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@#$#@%%$&*@
Packing!
Someone shoot me now, please. Or give me a kidney, damn it!
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Or give me a kidney, damn it!
I'll give you one of mine! :o
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Ya think if we traded, they'd decide to start working again? Give them a change of scenery, maybe that would inspire them to function?
4 hours of non-stop packing at the new house to get step-mom's stuff boxed and out, and it doesn't even look like we've made a dent in it. I came home exhausted, but the only reason we stopped is we ran out of boxes. Ah, well, my nap has me in a better mood, but I'm still sick of packing!
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AN OTTER JB!! I really want a pic of that!!
I am sorry you had to shovel snow before you could get out of the driveway. That sounds foreign to me!
I hope you get to swap back to nxstage soon. :cuddle;
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Turn, turn, turn.. . .
Step-mom called me today. Now she's coming back and I can't use the house. I was expecting her to flake out not long after I was in it, but not quite this soon! Apparently, the buyer she had for the family restaurant backed out, so now she has to come back to run it. Hmmmm. . . better her than me; that place is exhausting.
At any rate, my packing continues, and I'm going to apply to a rent controlled apartment only about 6 miles from the center I'm at now. If that doesn't work, I can stay where I'm at at least until summer - it's still only about a 15 minute drive. I've got lots of time to sort and get rid of my junk!
Thankfully, I've only moved a single carload of stuff to the new place. Step-mom has just doubled her work, though. We packed all her stuff and moved it out to the garage already!
I really did want to see the otter, though!
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It must be so frustrating to have things so unpredictable now - I pray it just means that simpler times are ahead.
:grouphug;
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Oh man jbeany, that SUCKS! I would be so pissed at her!! :cuddle;
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She better not be one bit angry that you packed stuff up and put it into the garage and cleaned up the mess in the kitchen. I wouldn't put a thing back. This is where being on dialysis comes in handy for once, which is very rare.
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So nice of you to start to clean things up, then she tell you she is coming back. I hope you soon get your own place, close to your clinic. It would have been nice for you to find another partner though, so you could have continued with your nxstage. You are in my thoughts and prayers.
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I am sorry Jbeany. All that work for nothing. If she is upset with her stuff packed up, give her my phone number! I'll take her on! I hope a good solution comes soon. :cuddle;
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That is too bad things did not work out. She got a clean house, though and all you got was screwed. Hope things pick up better for you soon!
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jbeany - where are you at in Michigan? I see your profile says Northern Michigan - is that the U.P? Or is it the northern part of the L.P? I'm also a Michigander who does NxStage. I live near Detroit, but my mother lives in Atlanta, MI (half hour from Gaylord).
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cherpep, I'm right by the Bridge. My center is in St. Ignace, at the north end of the Big Mac, but I'm below the Bridge with the rest of the trolls. . .
I called on the supposed "low-income" housing apartments in Mackinaw today. The woman at the office said they were income-based, with the lowest possible rent at $400, plus electric. What? I only make $800 on disability - how can that be income-based if they want half of what I get? Nuts. The other income-based apartments in the other closest town takes your income, subtracts major expenses like medical costs, and then figures 30% of the remainder to get a rental fee. Guess I have to go to the Housing Commission and see about getting on the waiting list for disabled housing now.
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:grouphug; hope tomorrow brings something better.
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cherpep, I'm right by the Bridge. My center is in St. Ignace, at the north end of the Big Mac, but I'm below the Bridge with the rest of the trolls. . .
I called on the supposed "low-income" housing apartments in Mackinaw today. The woman at the office said they were income-based, with the lowest possible rent at $400, plus electric. What? I only make $800 on disability - how can that be income-based if they want half of what I get? Nuts. The other income-based apartments in the other closest town takes your income, subtracts major expenses like medical costs, and then figures 30% of the remainder to get a rental fee. Guess I have to go to the Housing Commission and see about getting on the waiting list for disabled housing now.
That's what I am afraid of happening if I try. And probably Medicaid would want more too for being on my own, but they already get a good chunk of my disability income. I haven't looked further into it yet, just been to the office that helps, which got me some more money from the state. Not sure if this is a one time check or a monthly check, but $79 bucks is good for gas ;D Not ure if you have a county office that is called (your county) center for independent living. It is for people on disability and helps in various ways no matter what your disability is.
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I think this is a great idea - it's about PD but seems to make sense that it could be done for NxStage too.
http://ihatedialysis.com/forum/index.php?topic=12829.0
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jbeany - I guess you're too far away from anyone I know that might help you. It's good to see another Michigander on here, though. I worry about my NxStage going away too - because my clinic that supports it might close from lack of patients. I hope I can find another one in the area. When I was first looking into home dialysis - the only ones around here used Fresenius machines that required special plumbing and electricity. I want to keep my NxStage!! I can't believe my center might close - they are great. There are so many others around here that are busting with patients, it was hard to find one with a slot available when I was doing in-center. It's a relatively new center, so I just don't think people know about it. It's too bad.
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I mourn with you.