I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: lola on June 26, 2008, 03:34:51 PM
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We just got home from the Dr's office and they really think Otto will benifit from going with nxstage, they said training takes 6 weeks :banghead; but oh well. Wish us luck they are trying to get him in within the next week
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lola, I wish you all the luck in the world :bestwishes;
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All the best of luck. Sounds good to me and I bet you'll do really well.
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I sure hope he likes Nxstage. :thumbup;
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Hope it works well for him - I love mine!
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Sounds great....wish I could do it
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I love love mine too! Good luck!!
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Marvin and I absolutely LOVE NxStage and home hemo. He said it's the second best thing that has happened to him since he's been on dialysis (13 years and counting) -- the first best thing being his transplant.
Good luck to Otto!
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Petey,....does Marvin dialyze during the day or at night?
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OK so I just heard from our Medica person and they don't know if home-hemo is covered :banghead; They said since Otto is still working and not homebound they have to check WTF :Kit n Stik; we have our meeting Tuesday at the Davita training center to go over what training is about and then they can fit Otto in starting July 7th.
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Well that's confusing. Wouldn't home hemo be cheaper? Not that that should be the only consideration in my opinion but I'm just trying to think like an insurance exec.
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The reimbursement should be exactly the same - that's how Medicare handles it. Most likely it is someone who is confused; doesn't understand dialysis's unique nature and insurance status.
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My understanding is that the reimbursement is the same but the for-profit people like Davita and Frensenius actually make more profit on home dialysis.
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Get the big stick out! :Kit n Stik;
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Petey,....does Marvin dialyze during the day or at night?
Flip -- it varies according to what we have going on in each day. When I was in school (teacher), we usually dialyzed as soon as I got home from school (3:30 until about 6:30 p.m.), so we could grab supper and then have time in the evening for our other activities (little league baseball -- we're both active and coaches). If we had an early game one day, we'd wait and dialyze at night (9 p.m. until about midnight). On weekends, Saturday morning -- usually -- is our tx time, and Sundays it is in the evening. Now that I'm out of school for the summer, it just depends on what's on our schedule for that day. That's the great thing about home hemo for us -- it fits into our daily lives rather than having to be at the clinic at a set time. Usually, before we go to bed each night, we say, "Okay, what's on the agenda for tomorrow?" When we see what we have going on, we plan our dialysis tx for what works best for us. Today, we had planned to dialyze first thing this morning because we had a ballgame (tournament) we wanted to go to this afternoon. But, when Marvin got up this morning, he said, "I haven't had a day off this week. I think I'll take today off." So, he went out and cut the grass instead (something he's been doing since he's been on home hemo -- couldn't do for the 13 years he was in-center!!! Go, Marvin!). After he cut the grass, we went to the tournament, stayed all afternoon, went to eat dinner with friends, and came home. We plan to do a tx early tomorrow morning (Sunday) because we want to go back to the tournament tomorrow afternoon. We would like to check into home hemo nocturnal because we're very busy people; it's not offered in our area yet!
My understanding is that the reimbursement is the same but the for-profit people like Davita and Frensenius actually make more profit on home dialysis.
Checking our EOB's (Explanation of Benefits), it shows that DaVita charges almost TWICE AS MUCH for one of Marvin's home hemo treatments as they did for an in-center treatment. Go figure! It's OUR electricity, OUR water, NO overhead for them, I'M the nurse, etc., but they make twice as much. I have yet to understand that. But, I'm not complaining because we LOVE home hemo, and our insurance (Marvin has Medicare primary, and my insurance -- BCBS -- secondary) pays.
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Get the big stick out! :Kit n Stik;
You know me I will hide it under my shirt :Kit n Stik;
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Can you say INFORMATION OVERLOAD that is how we felt after our meeting today. Otto is going to start training on July 14th for Nxstage. :bandance; I'm so stoked, his trainer Kelly is also a D pt so she knows what her Pt's are truly going thru. As complicated as things seem about doing home-hemo they kept saying it IS easier then it sounds at first. I can't wait for him to start feeling better and maybe feeling "normal" again. :yahoo; :yahoo;
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You guys will do great...but you will be overwhelmed from time to time. Don't let that stop you.
Our trainers taught us the same way you learn a dance routine...one step at a time. Our first day, my wife did one thing and they said "ok that's it for today." Then we reviewed some chapters in the manual. The next day, the next step was taught and she put those two together and that was it for that day. We were done in 12 sessions, just one step at a time. It's the best way to do this because if you try to follow along every step right from the start, you'll go running into the street screaming.
Deep breaths, one step at a time, nice and easy...you'll do great!
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lola. don't worry. You get to use the "cheat sheet" as long as you need it to feel comfortable. Once you get the routine down, it will all seem easy!
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YEAH!!!! So happy that Otto is getting to do NxStage! It's overwhelming at first, but it gets so much easier. The best part is, he doesn't have to be away from you and the kids 3 x a week. 6 weeks is a long time, ours was 3. Learn as much as you can at training and as JBeany said, you have a cheat sheet you can use. You also have us too!
Rob doesn't love dialysis, but loves being able to do it at home whenever he feels like it. He feels sooooooooooo much better, more energy, no more :puke; and he's home with us.
Good luck!!!!! :bandance; :bandance;
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Otto's last day of in-center is in the morning :bandance; :bandance; I'm praying Otto feels better and stops losing weight, when he 1st got sick he weighed 250lbs and he NEEDED to lose weight but now today he got on the scale and weighs 190 ??? I think he can stop now. Just wish I could stop stuffing my face with ice cream late at night :oops; and start losing some too. Also no more "floater" tech's to mess with his arm :sir ken; :Kit n Stik;
EDITED: Fixed smiley tag error-kitkatz,moderator
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:bandance; he has you in his life and what else does he need
you are a wonderful person and a sore loser at the love the most post :waving;
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Control is a powerful thing Lola and I'm so glad you and Otto are getting some back. All the best and I know you'll do great and love the flexibility. :cuddle; :clap; :cuddle;
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:bandance; he has you in his life and what else does he need
you are a wonderful person and a sore loser at the love the most post :waving;
:cuddle; :thx; :sir ken;
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Lola, sounds to me like you can handle all of life's challenges pretty well. :bestwishes; to you and Otto as you go through the training.
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Hey Lola.....I bet you'll look good in scrubs....gotta keep it sanitary :bandance; :clap;
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Otto's thinkin fishnet and heels but I don't know if they have his size :rofl;
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Congrats. :clap; It can be overwhelming, you just have to take it one day at a time. It gets easier...
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If you get Otto in fishnet stockings and high heels, we want pics!
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I felt better the first week of training. The frequent, short runs made a huge difference in my health right away. Hope it works the same for Otto!
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I felt better the first week of training. The frequent, short runs made a huge difference in my health right away. Hope it works the same for Otto!
Marvin, too, had a drastic change after just the first week of training on home hemo (NxStage). It was similar to the week after his transplant -- really! He had renewed strength, energy, stamina, etc. He felt great -- and continues to feel great -- doing home hemo. Best of luck to Otto. We're right here if you have questions.
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:bestwishes; Good luck with the training. He should feel much better really soon!!
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Today was Otto's 1st day and he's amazed at how good felt after, usually he felt like crap after D but not today :yahoo; They did everything for him today but tomorrow he'll be taught his 1st step. Thanks for all your support xoxoxox :grouphug; :grouphug;
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..and the next day, they'll teach him another step, then another, then another, etc. It sounds like it would all be overwhelming, but if they take Otto through it step by step, it's a piece of cake!
So glad it went well and he feels good today after tx. I was thinking about him and worrying about him.
Go, Otto, go!
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First day good, each next day better and better. :grouphug; :grouphug;
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So happy to hear that it went well today, Lola. :cuddle;
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#2 and still feeling good :yahoo; Today they had him "watch" the steps. I hope you don't mind me posting, but I thought maybe it will let others see what Otto's doing and see another option. It's so great to see him come home not sick on D day.
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I am glad you are posting. I think I am brave enough to go to the NxStage center on Thursday and check it out.
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post every day! that's what we're here for.
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Lola, it is great that you are posting Otto's progress, it really is inspiring. And t will help when you look back on everything a few months from now when he is settled in at home. Some times, I go back and read my training posts and really laugh at how much easier it gets. You are giving us a real life perspective that is priceless.
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Lola, who's going to do the sticking? I've been working on doing my own and it seems pretty easy once you get the feel.
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Otto is learning how to do things himself. My biggest fear is he's become WAYYYYYYYY to dependent on me and I need to step back in case I'm hit by a bus. he he
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If you get to the point where Otto feels comfortable sticking his own needles, then you can train other family members and friends to help with the rest of the hands on stuff. It's nice to have options when scheduling conflicts come up. My mother-in-law can't stick the needles, but she is willing to do anything else that needs to be done. It really helps to have an alternate person to help.
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Today when Otto got to clinic they were kinda busy, so he looked at the machine and thought how hard can this be to set up. 10 minutes later his nurse came and about fell over because this is something he has not been taught yet and he did it correct :yahoo; she told him they might as well just send him home with WALL-E(kids named it) and he can teach himself. They are betting Otto will be done in record time :bandance; I'm going with him tommorow so I can start watching and learning also. Again he felt great today. If anyone is thinking about doing this DO IT.
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OK so now I'm a little freaked, Otto just told our neighbor he's having 2nd thought's on doing home-hemo :banghead; He says he's not gaining any "time" since now he's doing it for 5X's a week and his time is for 3 hours. He said even though he feels better he just is thinking it's not worth it :Kit n Stik; I'm going with him tommorrow so I'm gonna talk with them and him about it then. I'm just upset because I can see he feels better and I don't understand since I'm not the one on the machine H E L P!!!!!!!!!
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Does he have to do it 5 times a week?
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Yes 5x's a week for 3 hours
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His concern for time is valid, but he can schedule any time to dialyze. (I've done it as early as 7am and as late at 11pm) And there is no waiting for a chair or travel time. I couldn't imagine being so young and on dialysis. (I whinged that it cramped my style at 40)
In the end, all you can do is love him, respect his wishes and hope for the best.
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I guess I don't understand the time difference. Is NxStage less efficient than a regular dialysis machine. I was hoping for 3 days a week if I switch over.
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lola,
yes, time is a factor in home hemo. Marvin does treatments 6 x week, and each treatment lasts between 2:45 and 3 hours (depending on how much he has on and how much we set the machine to take off). Let's just round it up to a three-hour treatment. Marvin sets up his machine (takes about 30 minutes) every day, and I clean up (about 5 minutes) -- but this is not "extra" time for Marvin because he's also holding his sites while I do the break-down and clean up. If you add it all up, it's about 3:30 every day. Now, multiply that times 6. Marvin spends about 21 hours a week either setting up or running. Throw in an extra hour a week for inventory, re-stocking, etc. = 22 hours a week on home hemo.
When Marvin was in-center, his run time was 4:45 there at the end (one time during in-center, he did have to run as much as five hours). But, let's use the 4:45, times 3 (in a week). It was a fifteen-minute drive to and from the clinic. Once he walked in the door, it was about 15 minutes of pre-treatment stuff (weighing, bps, etc.), and another 15-minute hold when he came off. IF (and this is a great, big IF) he went on as soon as he got there, this procedure took 5 1/2 hours (times 3) = 17 1/2 hours per week on in-center. (This hardly ever happened because the clinic never took him back as soon as he walked in the door).
If you figure it like this (with the best-case scenario at the clinic), he spends an extra 4 1/2 hours every week now that he's home hemo with his treatments. (This figure is not quite accurate, as I pointed out above, because in reality we added about a half hour each in-center treatment -- sometimes more -- for it to be his "turn" to go back.) So, subtract 1 1/2 hours on average a week (half hour x 3) from the 4 1/2. That puts us at 3 "extra" hours a week.
What do we get for our additional 3 hours? Marvin feels sooooooo much better on home hemo. He has more energy, no more peaks-and-valleys (full the night before, dry the afternoon after, over and over). He is much more comfortable here at home in our place with his "stuff" around. He's able to drink more (because we take it off every day -- not much build up between treatments). His labs are much, much better -- which, to us, means his overall health is better. And, he's in control (which is a biggie to us). We think we're getting an awful lot for that extra 3 hours every week because it makes the hours when he's not running so much better. Other people may not like the trade-off, but it works for us.
I will say, however, that this home hemo wouldn't work for Marvin and me if we didn't BOTH "buy into it." If Marvin didn't think it was worth it for him personally, we'd go back to in-center tomorrow.
This is a big decision, a big commitment, and a big responsibility for Otto and for you.
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I guess I'm trying to figure if it's really worth it. I'm 5 minutes from the center and my run time is 3:15. I don't have to set up or clean up. Plus I have no supplies to store and a nurse if I need her. Where is the advantage?
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flip --
We see the main advantage in how much better Marvin feels every day (not just "off" days). Home hemo has literally made all the difference in the world concerning how he feels, how much more energy he has, how much healthier he is, etc.
Also, I'm the nurse (well, not actually a nurse -- but you know what I mean). In-center, there was one nurse -- but usually just a tech -- assigned to a row of patients, usually around 1:8 ratio. Here at home, I have one "patient" -- Marvin, and he gets all my attention and immediately when he wants/needs it. The ratio here is 1:1. (Some might argue that I'm not as trained as an in-center nurse, and I'm not. But, I have as much training now as the techs who worked at his clinic. Usually, there was one RN and the rest were techs on every shift. That means he almost always had a tech put him on/monitor/take off.)
Also, I am the only one who has cannulated him in a year (even when he was in hospital), and from what we've read, that should increase the "life" of his fistula.
Marvin NEVER waits for his time to "go on." The machine is sitting there waiting on him!
We also like the total control that we have -- not just in setting his treatment times but also in making sure everything is safe, cleaned properly, set up properly, etc. (I'm not saying he didn't have some good nurses and/or techs over the years of in-center because he certainly did. But, we KNOW everything is clean, set up, etc. by the book -- we know because we're the ones doing it.)
Also, on home hemo, he gets a "new" kidney/filter every treatment (his in-center was big on re-use --some times as many as 20 times!)
Then, there's the issue of Marvin being "exposed" to germs, colds, flus, etc. when he was in-center. That doesn't happen here at home. No one is allowed in our home if they have a cold, a fever, the flu, etc. (thank goodness I'm not a "sickly" person -- I haven't had a cold, flu, etc. in years -- If I did, I keep masks handy for just that purpose.) I keep bottles of Germ-X (waterless, antibacterial -- alcohol-based -- hand sanitizer) in every room, with a big one by the front door. Our friends and family all know that the first sign of a cold (fever, flu) for them means they can only contact Marvin by phone. Am I overprotective? Yes. And, here at home, I can do that. At the clinic, I couldn't control that.
There's also a factor of comfortableness here at home. Marvin has his treatments in his "sleep" pants, a tee shirt, and his bedroom slippers. He's in his house, his chair, his TV, etc. His clinic didn't allow a drink, a cup of ice, a snack. On home hemo, he can have these things if he wants them.
There's the flexibility issue for treatments. When he was in-center, Marvin's "on" time was 6:30 a.m. If he got to the clinic before 6:30 a.m., he didn't go on any earlier (sometimes later if they were running behind -- this happened often because other patients had difficult sticks, emergencies, etc.). If he got there late (and he NEVER did, but others did often), his treatment was cut short so he would still come off at the scheduled time, so as not to throw off the patient who had his chair behind him. In-center meant his Mondays, Wednesdays, and Fridays were controlled by the times set at the clinic. On home hemo, he picks the time every day when he wants his treatment. 7 a.m. tomorrow, 9 p.m. the next day, etc. If he has something he wants to do that day, we move the treatment time to fit his schedule.
The more frequent treatments allowed Marvin to come off all BP meds (he was on several different ones before -- NONE now).
He can drink more each day (an extra glass or two makes a difference).
Travel is much easier with NxStage. We traveled when he was in-center, but we always had to schedule ahead of time to get into a clinic. Now, we just take it all with us.
Marvin's clinic was a DaVita clinic. To save money one way, they cut the "chucks" (those throw-away, blue pads used under the arm to protect clothes, chair, etc. from blood) into THREE pieces. To use a whole chuck in-center would have been a waste -- so they said. The 1/3 chuck that they put under his arm was not as big as a sheet of paper. I use TWO blue chucks with every treatment here -- whole chucks at that! Marvin's insurance pays for the supplies, and I see now that his clinic was "stretching" the supplies to save money. I just didn't like that. If they'll skimp on something like a chuck, what else did they skimp on that I didn't know about? The last year or so Marvin was in-center, DaVita also devised a system for the nurses/techs to be more efficient. They were under heavy pressure to "put on" a patient in 6 minutes (from the time the patient arrived at the chair until they were actually running); someone up the line determined that was all the time required for a connection. I'm not rushed here at home when I'm putting Marvin on; if it's a difficult stick day, I take my time. I'm not rushing from one chair to the next to be more cost efficient for the company! Marvin is my "company," and I only have to serve one chair -- his!
These are some of the advantages we see; I'm sure there are others.
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lola, wouldn't Otto rather be at home with the kids, even hooked up to the machine, than stuck in-center watching bad tv? He could use the time to read, help with homework, play board games or video games with them. . . .
petey has most of the advantages covered there. Might I add a few?
Like - No listening to the patient in the next chair puke.
No smelling the patient in the next chair using the porta-potty with only a curtain for cover.
I do a 3 on, 1 off schedule, so I have even more days off than Marvin.
I like that my butt doesn't get numb from those horrible chairs in center. No sticking to the vinyl on hot days!
I like that I never have to wait for a nurse to check on me when I think that my BP is dropping. (First you have to get their attention, then they have to check your bp, because your word isn't good enough - they need numbers, then, finally, they might get you some saline, and maybe think about resetting your UF goal - maybe.) At home, if I feel my bp drop, I can immediately stop the UF, give as much saline as I feel like, and I never have to wait for anyone. I also set my own goals here, with no arguing needed.
My potassium clearance is so much better I no longer have to restrict those foods - potatoes, tomatoes, OJ, bananas - all are back on the menu. I still have to watch the phos, but it's certainly easier to follow a diet without so many restrictions.
I feel so much better on home hemo that I was able to go back to work part time - I haven't worked in almost a decade.
I can have company, do big, messy craft projects, watch what I want to on TV, thanks to my DVR, talk on my cell phone, answer my land line, eat and drink whatever I want without silly rules about it, even sit and talk to my cat if I feel like it. (She's been trained not to come in the room while the machine is running - but she sits at the open doorway, and meows at me to see if I'm almost done and ready to come out yet.)
I also saved time switching to home hemo, but then my closest center is an hour's drive from my house.
Over all, it turned dialysis into some boring, repetitive chore that I do at home after the rest of my day is done, instead of some tremendous hassle that I had to drag myself out of bed to face 3 days a week. Now that I have energy to do things, I have days that I think - "Finally, time for dialysis. I'm ready to sit down." I don't dread it anymore. This version doesn't make me sick, tired and wobbly.
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Today Otto did well except they at first had him set to run for 4:55 Otto about had a stroke so they pulled him off after 3:00. He only had to have .3 taken off for fluids and that happened in the first 30 mins. He is just not sure this is what he wants, so my hands are tied since this is his life. It's very hard to keep my mouth shut since I see how much better he looks and feels. It's getting him past he's now gone 5X's a week and feeling like he never sees the kids. I have so much to do before his machine comes home and now he just asked me to stop and wait till he makes up his mind. :banghead;
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Today I empathize with Otto....so much.... I spent a couple of hours at NXStage in Charlotte this morning. A couple of NXers talked to me and are really happy with what they are doing. One man said has used NX 2 years, loves it, travels when he wants, has had no health problems, some minor equipment problems but always got help so I was really pumped when they took me in the conference room and once everyone got done talking to me I REALLY DON'T KNOW. I asked about dialysing every other day instead of 6, I don't even care if I have to sit 3 hours at a time, just am not sure about 6 days a week and they emphatically said no, said "possibly" in 4 months I can cut back to 5 days a week, and want me to start on the 28th of July and besides the 2 needles I also will have to give myself my EPO subq...grrrr... I at this time feel great, numbers are very good, all except PTH and I started Sensipar today so what will HHD give me?? This is a super huge decision now...I don't want to start and then stop...I am hmmm not depressed but really want to sit in a corner and cry......I also saw surgeon today who said my fistula is great and ready to use so I can start learning to self canulate. Any and all suggestions will be appreciated, also a huge thanks for just listening.
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Ok, now I feel like a NxStage pusher, but why not give it try for a month or two at home. You can always go back in center.
Lola that may work with Otto. I feel that you'll never know until you try, and the training is just a taste of the therapy, things are so different when you are in the comfort of your own home.
NxStage isn't for everyone. But for some, (me included), it changes everything.
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I guess that answers my original question. I was hoping I could do NxStage on the same schedule I have now. I guess I'll stick to my 3x3 in the center. I don't want to give up any more freedom.
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Lola - Rob had the SAME concerns that Otto has now. What size needles does he use? That makes a big difference in the speed he can use, which goes hand in hand with time. At first Rob had a long dialize time because he was using smaller needles and only running at a speed of 350. As his fistula matured he was able to go to size 15 needles and run at a speed of 450 with a filtration rate of 32. That brought his time down to 2:30 - 3:00 depending on how much fluid he had on.
He didn't think it would be worth his time at first because he felt he was spending more time on the nxstage than in center. After 4 months he felt that being at home really was worth it. He felt like he slept, worked, then dialyzed and had no time to himelsf. He is now able to spend time with my son, he doesn't have to wait to dialyze, can do it at any time. It does take time to adjust, but definitely push him to try it out.
Truly, this was Rob last year at this time and now he is so much happier!
Good luck!
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Today they started to use the 15 needle and speed of 450. I don't want to push to hard since this seems so much for him, and really it's got to be his choice so he can't point the finger at me. I'm praying he can get past the training and get home and then make his decision. I also want to see his labs on nxstage so I can show him there is a positive difference. Thanks guys for everything. :grouphug;
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Otto was trained yesterday how to do his labs, he's going to start sticking himself also this week. Otto is going to wait to get the machine home and try it for awhile before he makes his decision about home-hemo. I think part of the problem is he's sick of getting up at 6:30 every morning to go to training. The couple next to him are from out of town and the sweetest people (60-70's), they are on week 6 and it still took them over 2 hours to set up the machine yesterday. Otto is feeling so bad since he has his setup down, they think Otto will be done with training next week :bandance; he's pretty happy but feels really bad for the people next to him since he started after them and will probley be done before. I told them about IHD but they don't have a computer.
EDITED: Fixed smiley tag error- kitkatz,moderator
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Some people just have a longer learning curve with mechanical things. It took me longer than it did my tech-geek hubby to get the hang of things. After a year on it, I only need the manual when we get some odd alarm.
6:30 sounds lousy to me, too - but it will be worth it in the long run!
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We jsut found out WALL-E (kids named Otto's machine) will come home August 1st. He will do his 1st run on the 3rd at home as long as everything keeps going well.
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We named Marvin's machine "Hercules" and had a BIG party when we brought him home. Good luck!
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lola,
we need an update on Otto and the NxStage training!
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just bring it to Chicago and we can all use it
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Otto is doing everything himself except the poking part, he thinks either tomorrow or Monday he will do that. He is really wanting to be done, WALL-E comes home next Friday. Today they used blunt needles for the first time and he said he didn't even feel them :bandance;. He is wondering why they don't use Nxstage in center since he feels so much better and his labs are looking better. Otto is so glad he can start drinking Coke again. They do want him to start a vitamin called Dialyvite, are any of you guys on it? I wish we were able to bring WALL-E to Chicago we both REALLY need a vacation, but we're still just newbies. Otto is starting to accept home-hemo a little bit better, I really think he was over whelmed with the training and getting up at 6:30 every morning, and once again being the "baby" in the center. I will let you know if does his own button holes in the morning.
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I take Renalvite which is a renal vitamin much like Dialyvite.
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Lola, This is sounding more optimistic. I was worried about Otto. Tell him to keep thinking, "One more week... one more week..." It really does get easier when you're done with the training and you start actually doing treatments at home!
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I'm on Dailyvite 800 +Zinc...it's very reasonably priced, ships right to your home, and seems to be doing a good job for me.
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Lola, I have just found this thread. I'm so glad you continue to post Otto's progress. Very informative in so many ways! Sounds like he's going to be ok with this.
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I'm also on Dialyvite. Mine is Rx and I have a $10 co-pay.
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Well today is the end of week 2 :bandance; Today Otto was going to stick himself but he was working till 5am and only got an hour of sleep so he said he was to shaky. Monday they will teach him how to stick himself, next week I have to learn the emergency procedure and also how to stick him. >:D Do you have any problems on Dialyvite? We are getting them tru Snyders and then I'll use reciept for tax write off since ours is not an Rx.
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I've never had any problems on Dialyvite. Mine are Rx because they have extra folic acid.
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Hi Lol! I just discovered this thread and found Otto's journey with NxStage pretty interesting. I've been doing home hemo now for about 5 months, using NxStage. For me, the charges are lower to do home hemo, much lower than they charged for in-center treatments. But, I also switched dialysis providers.
It sounds like you guys are doing very well with the training. By the time we completed our 3 weeks, my husband & I had it down. We named our machine Mary (Bloody Mary, he he). I think the other posters have done a great job in naming several of the benefits of doing it at home. For me, I love it because of the extra time I get with my family. I would never go back to in center, unless I had to.
We just travelled for the first time with machine Mary. I loved not having to arrange for dialysis as a center near our vacation place. They shipped the dialysate and cartridges directly to our cabin, so we didn't have to haul all that. However, hauling the machine and saline did add a bit to our regular vacation bundles. Although I was nervous at first, performing dialysis away from home went beautifully. It is great to know that we have this option. We made treatment packs of all the little supplies we would need - gauze, needles, alcohol wipes, syringes, etc; we put them into separate ziploc bags - one for each treatment. Then, I threw in a few extras of everything in a separate box. That way, we knew we had everything we needed plus some. Anyhow, I think this is a great advantage to home hemo with NxStage - being able to take it on the road.
Since everyone has told you about the upsides, I thought it might be helpful to hear a couple of the downsides. Everything has its ups and downs, and for me, the ups definitely outweigh the downs. But, it might help you in making the final decision and what to expect. First of all, it can be a lot of pressure on the care keeper. I am very thankful for my wonderful husband, he never complains. He loves having me at home and loves the changes in me since home hemo, including the lab results. However, it used to be that I would have dialysis, and besides dropping me off or picking me up, he maintained a normal life. Now, he is right there with me during the entire treatment. He might leave the room for a moment or two (we have a baby monitor, he takes the remote), but he is tied to the treatment almost as much as I am. I feel bad that I've added to his daily pressures, but he says its all worth it.
My husband and I love each other very much. We are in our early 40's. After becoming his nurse everyday and being concerned for him, and being such an integral provider of his care, you may have to work through some different feelings. It may take away some of those feelings you have in the bedroom, if you know what I mean. We've been able to work through those feelings, but I still feel like he treats me like something very fragile and is sometimes afraid. This changes a lot for the caregiver. We know how much better it is for the patient, but you really should be aware of the changes it will require from you. As I said, my husband and I feel it is completely worth it, but have had to work through a few things in the meantime. I still feel guilty for what I've done to his life, but he has never made me feel guilty. Does that make sense?
Anyhow, thought I'd share a couple of my feelings. I hope everything works out great for you & Otto. Bless you for being with him.
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I have been with Otto since I was 18 and I have been thru more with him then most in a lifetime. I love taking care of Otto, wether it's been with his Kidney or having both hips replaced 2x's I am ready for this new challenge although as scared as I might be at first the benefits I've seen already are so worth it. Cherpep as for the "other" thing you mentioned since he started home-hemo it's like we're teenagers again since he has energy :bandance; >:D
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Hurray, lola! Hope the energy burst is enough to convince him that all the positives outweigh the negatives!
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Well Otto did his needles today :bandance; He said the first one went in great but the second one he had to fish around for :puke; and still was having problems so they did it. He said he was totally freaked out doing this on his own but knows he needs to do it. I'm praying that tomorrow goes better since this is all he needs to get down in order to start doing it at home. Today he was an hour late :oops; we fell back to sleep after the alarm went off, good thing there so nice at his center they thought it was kinda funny.
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I was very nervous about cannulating myself. Everthing else I had down in no time at all. Inserting the needles myself made me very nervous, and it took me a while to be comfortable with it. My button holes never really took, so I always use the sharps. Unfortunately, I have poked all the way through a couple of times. However, it doesn't happen near as much as it did in the clinic. I know my body, I know when something doesn't go in quite right, I know when something doesn't feel right. Therefore, I can stop the procedure much sooner before my arm blows up and the pain starts. At this point, even though I still may be a little nervous, I'd rather do it myself than have anyone else poke around in there. After a few times, I'm sure he'll get more comfortable with it too, especially if he uses the blunts. Nobody knows his arm better than he does.
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Thank you for putting this info in about your training. I hope they approve mine.
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I just wish they would start doing in center Nxstage, I still can't get over how much better Otto feels since starting this. So many more people could be on this if it was in center.
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I don't think it's the NxStage itself - I think it's the frequency and shorter run time, combined with the lower fluid gain. I think you could do the same with a standard machine.
Sad that what's really keeping in-center patients from the health benefits is scheduling and payment issues.
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Today the kids and I went down so they could meet "wall-e" Otto did his 1st needle again but had trouble with the 2nd, even the nurse had problems. His fistula likes to role, so tomorrow I'm going to see if it's easier having me do it since this is what is keeping him from being home. Otto is pretty :'( that he has to come back Monday since they all thought Friday would be his last day, they said he is a star student and has no control over his fistula. The couple next to him will also be back next week, I felt so bad today the wife went to put the needle in and the next thing I knew there was blood going everywhere, I thought the kids would freak but they did fine. We started to bring supplies home today, got the letter to send to elec, gas, tele,water companies today so they know we have to have things running because Otto has a machine at home keeping him alive.
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My top site has a bit of a roll problem as well. Hubby has learned to actually hold it still with his other hand while sticking. Not sure if that works as well with a fistula as a does with a graft, but maybe you could try it?
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My top site has a bit of a roll problem as well. Hubby has learned to actually hold it still with his other hand while sticking. Not sure if that works as well with a fistula as a does with a graft, but maybe you could try it?
jbeany -- you are one smart cookie! Yes, Marvin's arterial rolls, and I place my thumb and pointer finger from my left hand on either side of his fistula while I cannulate with my right hand. I don't squeeze or apply much pressure -- I just sort of "hold" it in place while I'm cannulating. It works!
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On another thread I believe Adam said he uses a clamp to keep his from rolling so I'm going to try that since the tourniquet doesn't do it well when I self cannulate.
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Today Otto did great :bandance; :bandance; Me and Kelly his tech were jumping around we were so proud of him, although after he said he felt like he wanted to :puke;. Keely also is on D and told him it will get better with time. We got our blood spinner today and waiting for our HUGE shipment Friday. Today I was telling Kelly about IHD and that she should check it out not only because she's a tech but also because she's on D and using the Nxstage. When I was watching all the stuff Otto did today with no help I was so proud of him. :yahoo; :yahoo;
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I'm so glad that you and especially Otto are reaping the huge empowerment benefits of self-care. The more I do for myself the more I feel my power. Please tell Otto how pleased we all are for him and how nice to hear that's things are progressing so well. :cuddle;
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:2thumbsup; Nothing any better than treatments at home!!!
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Big :cuddle; to you and Otto!!!!!!! :yahoo;
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Great news, lola! A big pat on the back to Otto! I hope he will have as much success with home hemo as my Marvin has had!
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Thanks so much you guys, it's because of you that Otto and I have been able to make such great choices. :grouphug; :grouphug; :guitar:
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Well Wall-e and all his stuff just was delivered. I am soooooooo overwhelmed, I could just :puke;.
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Once you get it organized, it's not so bad. You'll work out a system. I've got a floor to ceiling shelving unit that is meant for garage storage. That and one of those plastic dressers on wheels contains everything but the last 6 boxes of back up pre-bagged. That's just stacked in a corner.
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In the beginning, I made daily kits of syringes, band-aids, gauze, needles, etc in ziploc bags. It made it a little easier getting ready. I also created my own step-by-step list, condensed it to 1 page, put it in a page protector and taped it to the back of my clipboard. The clipboard holds the daily run sheets, flip over the board and I have my how-to list. I also put important telephone numbers on that page. The only thing I have to pull a manual out for is when we get an error. This really made set-up so much easier! Good luck!
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jbeany and cherpep are right -- when you get it organized like you want it, it will be a piece of cake! We, too, have found ways to make "extra" storage space in Marvin's home "clinic" -- shelves, shelves, shelves! We label every drawer, every shelf, every cabinet in Marvin's clinic so we can quickly find and quickly re-stock his supplies. We have a couple of "rolling" carts full of drawers that work good, too (labeled, of course, on the outside of the drawer so we know what's in them). After a month or two, we hardly ever looked at the labels anymore -- we just knew where everything was supposed to go. I wished we had a bigger room (it was a spare bedroom) with a bigger closet (boxes stacked in there six high), but we're making do with what we have. It will work for you, too, but I know how overwhelming it is at first. Hang in there -- it gets easier!
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Does your Pureflo unit have a wheel base? I had to ask specifically for one. This is very useful for us, it allows me to wheel it out of the middle of the room when not in use.
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We went and bought one today for wall-e
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:bandance; :bandance; Otto's done with training :bandance; :bandance;
EDITED: fixed smiley tag error-kitkatz,moderator
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:bandance; :bandance; Otto's done with training :bandance; :bandance;
Hooray!!
Hubby and I are newbies at NxStage as well, dealing with supplies was the first big hurdle.. but it gets better once you can see and arrange it all.
I use a baby changing table (no changing pad) for all of the daily supplies, box of saline off to the side, boxes of pre-bagged in the hall closet (with the rest of the montly supplies). I cut down boxes to serve as dispensers for syringes, cartridges, etc. that way I don't have things sliding off the changing table. I restock the table about once a week.
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I've been kinda drawing up plans for mine. After the TV, wet bar, microwave, and fridge, there wasn't much room left for dialysis equipment. I guess I need to select a larger room.
Has anyone tried the new dialysis chairs?
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I've been kinda drawing up plans for mine. After the TV, wet bar, microwave, and fridge, there wasn't much room left for dialysis equipment. I guess I need to select a larger room.
Has anyone tried the new dialysis chairs?
You forgot to save room for the Wii, the massage table and the ice maker.
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the Wii hooks into the TV
the new dialysis chairs are heated and give massages
the ice maker is built in the fridge
:2thumbsup;
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Today was Otto's 1st day at home and things went pretty well just a few minor :oops;. I could not believe how fast it went by even Otto was amazed. I really hope anyone considering home-hemo tries it, once you get past being overwhelmed from training it's well worth it in the end. Thank you guys so much for all your support :grouphug; :flower;
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:bandance; Yay lola! I hope it just gets easier everytime!
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How long is Otto dialyzing and how many days?
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he will be on 5 days for 2.5 hours. No more drive time or wait time :bandance;
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and how did Otto get by with only 5 days...they told me in no undertain terms 6 days....grrrr.
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why can't you do 3 days with longer runs?
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Has to be 6 days a week....with any day in between off...I checked and double checked that...I even asked for longer and every other day and the answer was unequivocable "NO". I can do 3 on, 1 off..they don't even like 2 off together...grrr....where's a grrrr icon???
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3 on, 1 off works out to 5 days a week most weeks, G-Ma. Every once in a while it rolls over to 6. Check it out on your calendar.
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Thanks jb... :bow; :bow; :bow; I know but I wanted what I wanted....every other :rant; :rant; ...oh well...grabbing my teddly and dragging my feet off to bed.
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I think they just want to sell the extra supplies.
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I was told that the NxStage machines are gentler and cannot perform the same dialysis as the in-center machines. that's why it must be done more frequently. G-MA, they originally told me 6 days. Then, after consulting my labs after being on the machine a while, my nurse spoke with NxStage and they worked it down to 5 days, and increased my dialysate from 20liters to 25liters. I have to dialyze a few minutes longer each session, but I got it down to 5 days. That's a big difference!
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I may back out then. I don't want to spend more time on dialysis than I already do. I'm usually in and out of the center in 3 1/2 hours and I don't have to do anything. No storage, no cleaning and no hassle. This is giving me a whole different perspective.
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thanks cherpep....I now have a goal.
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Good luck G-Ma. I do it 3 days on 1 day off, 2 days on 1 day off. I will vary my days off according to my schedule. So, occasionally, it will be 4 days on, or even just 1 day on. It depends. My nurse told me to that I can take whatever 2 days off that I want, they just prefer them to not be back to back. My labs have been fantastic, so that is working well for me.
During training, we actually trained for 5 days then 2 days off during the weekend. This was not their preferred schedule for long term. However, at least I learned that I could do that if necessary. This weekend, I will be camping with my family. I'm not taking the machine to the campground. So, I've done dialysis each day this week, and will take 2 days off together this weekend. I'm sure I'll be fine, as long as that's not what I do every week. I am really looking forward to getting away. Wish me luck!!
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Otto is keeping his training schedule of M-F. He wants his weekends off.
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Good for Otto, that's a great schedule. Let us know how he feels and how the lab tests come back after his first month.
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His labs are already showing amazing results. Most of his labs are now "normal". But the biggest thing is how much better he feels
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I've gotten so used to never having fluid build-up, I don't think I'd want to go to a 2 days off in a row schedule. I've also got twice as much energy as I had on in-center. Glad Otto is seeing that difference, too!
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Davita has agreed to let me go solo if my doctor will approve it. They also said I would have to do 6 days due to my size (78 kilos). She said only small people can do the 5 day routine.
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Baloney, flip. I weigh more than that, and I'm on 5 days with a 3 on, 1 off schedule. My labs are spectacular.
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I kinda got the feeling that it might be negotible. I don't see how so many people can run the same amount of time every week. In my center, people run anywhere from 3 to 4 1/2 hours and some only run 2 days while a few run 4.
I still don't understand why you couldn't do NxStage for 4 hours, three times a week.
She also said that it wasn't approved for nocturnal either.
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Flip, Otto weighs 88 kilos, I'm glad they'll let you go solo.
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It still depends on whether my neph will sign off on it.
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They are starting trials of "extended" with NxStage. (They aren't allowed to call it nocturnal yet, for some reason. As if anyone would agree to be hooked to it for 8 hours straight without being able to sleep thru it.) The biggest issue with that is that it's not set up for gradual dosing of heparin, and you need a separate pump for it.
I'm not sure of the reasons behind not doing it on the 4 hour, 3 day schedule.
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When I started on NxStage, I was on a 6 day per week schedule. After a few months, I asked about going to 5 days. My clinic deferred to my neph. My neph said that 5 a week is ok as long as the two days off are not back to back.
I had to take two days off back to back because of some problems with my access after my day off and I fely horrible after the two days off. I will never do that again if I can help it.
From what I understand, everyone starts on 6 days, and then after a couple of months the schedule can be backed off if everything is good. The best thing is to ask questions, especially the "Why?" question.
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As to the size issue- It's more a function of Muscle mass and activity level.. So 100kilos could be okay with 5 treatments if you are not producing a lot of Acid from anaerobic muscle activity.
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:clap;after 2 days off Otto's blunt's went in on the 1st try. Everything went so nice today. :bandance;
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;D So glad to hear that the nxstage is working for ya.....if you need any supplies, let us know- we did nxstage for 8 months and now have a transplant- so ya need anything? Step righ tup..the price is right.....
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We did have to go buy a plastic mat for under Wall-E Otto forgot to clamp when he was coming off and got blood ALL over the carpet :puke; now it will wipe up with no problem. Otto is doing D in the living room so he can watch everything that is going on. Most supplies are in the basement
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Today was Otto's 1st day using the pureflow and must have done something wrong because the next thing he knew it looked like his saline bag was going to burst :oops; he's just redoing everything so if you don't hear from me again he blew up the house (hehehe)
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I can't imagine what he did. When he figures it out, let us know. I never heard of that happening.
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Sounds like he forgot to hook the drain line to the Pureflow - so the machine drained back to the saline bag. (he is not alone in this mistake! Even seasoned pro's have been known to do that recently....)
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Wow...my grandaughter asked the other day what would happen if fluid backed up into the saline bag and nurse said "oh that can never happen". oops.
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happens often. Yellow line needs to be disconnected from saline bag and connected to a drain.
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We did have to go buy a plastic mat for under Wall-E Otto forgot to clamp when he was coming off and got blood ALL over the carpet :puke; now it will wipe up with no problem. Otto is doing D in the living room so he can watch everything that is going on. Most supplies are in the basement
Hydrogen peroxide works miracles - as someone with a cream colored chair for my dialysis room, I know this well!
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yes it does. I always have a bowl of it soaking something.
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We did have to go buy a plastic mat for under Wall-E Otto forgot to clamp when he was coming off and got blood ALL over the carpet :puke; now it will wipe up with no problem. Otto is doing D in the living room so he can watch everything that is going on. Most supplies are in the basement
Hydrogen peroxide works miracles - as someone with a cream colored chair for my dialysis room, I know this well!
Thanks I'll have to remember that.
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My dialysis chair at home is red - best decision I ever made!!!!
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It wasn't a choice I would have made on my own! It just happened to be the only recliner in the house. It was purchased second hand, so the color choice was never my favorite.
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REDDDDD ...would love it.....whoo hoooo...well, mine for now is a wooden rocker and I'll get a footstool...my couch set has recliners on it, however it's all microfiber and new so I hate to ruin it with my gusher once in awhile unless I put plastic over it while I dialyse, however the nurse today said the rocker is ok if comfortable so think I'll go with that and a corner of the living rm will be hm to R2D2.
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My clinic actually provided me with a chair - ordered it from Gardner White, I got to pick the color.
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My nurse actually thought I was crazy when I kept saying red. Then he thought about it and thought it was a good idea. Actually, it being the same color as blood never even occurred to me. I just wanted RED because it would be in my RED WING basement, LOL!! It matches the decor.
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crazy info from clinic again...they told me I was responsible for my chair........gotta love them.
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My clinic actually provided me with a chair - ordered it from Gardner White, I got to pick the color.
W H A T!!!! I wish they would give us a chair :bow;
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A couple of month's ago Sharon had a gusher from under the seals after finishing a treatment, quite a bit went into the cream colored carpet and onto her green recliner, cleaned it up right away and used a lot of Hydrogen Peroxide, but the next day after the area dried I could see where every drop had been, so I mixed up a solution of Oxylean and soaked it well, I have one of the "little green machines" to extract it after soaking a little while and when it dried no more stains......
Tom
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Today Otto had his 1st labs to be done at home and he did great :bandance; :cheer: :cheer:. Today he also had to do things with out me since I had a start up meeting for the bus company. Anybody who is thinking about doing home-hemo GO FOR IT!!! Otto for the last 18 years has had me doing everything when it comes to his health and him doing this on his own was VERY scary but he did it and it's the best thing, he feels so much better and his labs are also liking home-hemo :cheer: :cheer:
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:clap; :cheer: :clap; :cheer:
I am so happy it's going well!
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Cheers for you two.......way to go.
:cheer: :cheer: :cheer:
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Hooray! :cheer:
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Goooo OTTO Go :cheer:
:yahoo; :yahoo; :yahoo;
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Congrats to both of you. So glad things are going well. It only gets easier.
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Today was a BAD day. Otto could not get his blunts in, so he skipped :boxing; They are pissed and said if he can't get it tomorrow they are coming out. His trainer called me because she could tell how upset he was and didn't want to push him to hard, but explained that he can't go 4 days without D.
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Sometimes there are days when nothing seems to go right. And then everything clicks. I hope tomorrow is better for Otto and for you, Lola. :cuddle;
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Oh Lord...I hope it works tomorrow...I sometimes think I'm years away from blunts...my venous vein keeps rolling so never the same place twice although I'm getting it better than the arterial..I think too many bends down there. Hang in there you guys along with me.
Ann
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After Sharon has a day off I automatically grab the sharp needles, it is very difficult to get blunts in, after that blunts work fine.......
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Didn't they give you sharps as well? If they didn't think to do that, it's their own stupidity causing the problem!
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Didn't they give you sharps as well? If they didn't think to do that, it's their own stupidity causing the problem!
I was wondering the same thing. It makes sense to have sharps if needed.
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Didn't they give you sharps as well? If they didn't think to do that, it's their own stupidity causing the problem!
I was wondering the same thing. It makes sense to have sharps if needed.
we were send home with no sharps, we sometimes have to use a couple of blunts but we finally get it in
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Yes he has sharps. He got the blunt in but no flash back, his arm is buzzing away so he will try again today and if he can't get it then they will come out. Otto thinks since he feels fine it's no big deal to miss :Kit n Stik;
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He's on :bandance; After trying with blunts he had to break down and use sharps
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Yeah, after a day off I have to use sharps sometimes. Keep it up, the buttonholes get easier to use.
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My buttonholes never took, I tried for months, always in the same place. The fistula didn't roll or anything, but I'd push & push & push, but the blunts just wouldn't break through. The nurse also could not get them to work. I always had to use sharps.
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Otto's been using blunts since the 1st week of training and this is the first time he had to use a sharp ???
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Mine is not seeming to work either...we must be fast healers cherpep??? :rofl; skin that is.
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We lost power last night as Otto was making a new batch, now he has to use the bags Thank God I made him order more "just" in case. I'm noticing his hair is REALLY thinning is this normal?
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Otto's first Dr appt since starting home-hemo went well. One thing they did was cut his cellcept in half and next month they may stop it all together, it's weird seeing drugs he's been on forever go away. They also upped his Foslow(sp?) They can't figure out why after all this time of his blunts working that now he has to go to sharps, and let me tell you Otto is one unhappy little boy about that. The rest of his labs still are looking good although they may also add IV iron even though his Hemoglobin is the highest it's been in 2 years(12.8) something else to do with it is to low. :cheer: :cheer:
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I forgot to ask how often do you put bleach down your drain? I was told we'd know because of the smell, well last week went into do laundry(we have lines running down there) and about :puke; from the smell poured a whole bottle and smell went away, well just went to do laundry and again :puke; Otto is running now so does it just smell because he's on? or do we need to pore bleach more often?
EDITED: Fixed smiley error - okarol, admin
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I was told to pour bleach once a week for sure just to keep the line clear.
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Are you guys talking about the waste/drain line or the kitchen/bath drain? No one told me to pour bleach down anything. We've never noticed a smell. I'm using bags, though. Would that make a difference?
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Sounds like your drain goes into an open "p-trap" (like your washing machine goes into), it will leave an amount of drain fluid in the trap open to the air, you can pour about a cup of water into the trap after treatment to help clear it. What I did was install the NxStage provided clamp to the drain pipe under Sharon's bathroom sink (it is below the P-Trap) clamp goes around the pipe, drill a hole through the opening in the clamp and insert the drain line, no more smells......
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Our center gave us used everything.. including that horrid black hose / drain line. Nurse told us we could use drainline extensions and the black hose only needs to be in drain when you are draining a sak.. WRONG :urcrazy;
When we make batch it oozes out a bit during conductivity phase .... we figured it out the hard way when I smelled this awful "something gone bad" stink behind the machine where the hose was curled up. It had leaked on the carpet. :puke;
We used a big cup of bleach water and squished it into the control unit drain .. 30 cc at a time.. followed by water. Ran a bleach wipe all down the tubing when reeling it up again and on the end of the hose put a blue pad/chux before putting the whole works in a garbage bag.
No more stinkiness :2thumbsup;
We live in an apt, water from bathroom sink (reel it up when done) and drain into tub.
The black hose diameter is too large to allow the bathroom door to close. We put up with it every two days to make a new sak only.
I wish the NxStage could have been slightly more house/personal use friendly.
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If you think about it - Otto's essentially peeing down that drain every time he uses it. You might want to pour a half cup of bleach down it every time, or at least every other. The fluid that drain reeks like rotten flesh - it's nasty!
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:banghead; Otto and Wall-E have not been playing nice all week, one code after another now Otto's making a batch and once again it's a new code every 5 minutes. Otto called Nxstage so he's starting from step one and said maybe Wall-e wants to retire early because he's thinking he wants to also. :Kit n Stik;
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Oh man...hope the next week goes better for Otto...I had trouble with needles and of course the accompanying alarms and today just feel like yesterdays run didn't clean me out because I have that "taste" in my mouth so will be extra vigilant about tomorrows needles and run. Some days I am so very close to calling and saying "OK I'll go back in center"...just get me out of this mess. It might be easier if I had someone else to stick me more often but I hate to call my daughter in law away from her job etc just to give me a break as she gets the sticks done so well. :banghead;
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G-Ma, this may be totally out to lunch but is your granddaughter with you for every treatment? Does and can she help by holding the vein? Would/ could she ever do the sticks? Would you be confident in her?
I'm guessing that the answer is no but was wondering about all that. :cuddle;
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Hi....yes gdtr is here for all treatments and does hold my vein very well....I think she would be fine sticking me but I want to do as much as possible on my own...she was not happy today as I wanted to do everything and had her just hold the vein....but it too shall pass...I need to know all this so I can dialyze if I go on a trip or she goes on a trip and I need other help. I just had my dtr in law trained to cannulate me in case I get the flu or something and just feel like :puke; so to keep in practice she likes to stick every couple of weeks generally on a Saturday, so that's my vacation day ha ha. Sarah "corrals" the vein and even tells me where it feels strongest etc so we are a good team.
Ann
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Makes sense. I was just thinking like a backup for days you have trouble, but absolutely you should do as much of the sticking as possible yourself. :cuddle;
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Yes...dtr in law would stick me if I have trouble but I don't want to get into that sort of rut....it would be just to easy to have trouble all the time I'm thinking....ha ha..... :banghead;
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Otto is just getting back on Wall-e and it is breaking my heart, I just hope it goes ok with no problems
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Poor Otto, and poor you. I'm so sorry; this must be very hard. I'm sending hugs to both of you and hoping things go okay. :grouphug;
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Lola, my heart is breaking for you and Otto. You continue to be in my thoughts and prayers. :grouphug;
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So sorry Amy. I hope that you can just take it day by day. :grouphug;
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Sending hugs and wishes for smooth runs, Amy. :grouphug;
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Today It took forever to get Otto on Wall-e as he didn't wanna play :banghead; well he got done and when he pulled the 1st needle he told me to come look at his arm and the top was like a balloon so I called our nurse who said to get him in asap, well that took another hour of begging and once there they did an ultrasound and said there is narrowing and made an appt to see surgeon in am. Well Otto's treatment plan is a little diffrent NO surgeon NO dialysis :banghead; :banghead; I'm praying he will get a good nights sleep and change his mind in the morning.
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I hope he will feel better in the morning...my narrowing just took about 5 seconds to fix and it is working great. I hope he tries it. Prayers to you both.
Ann
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:grouphug;
I hope he changes his mind, too, Lola.
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:grouphug; Poor guy.
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:grouphug; :grouphug;
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Thanks G-ma, I wish someone would have explained this to Otto as he's thinking he needs major surgery.
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Otto has agreed to go in at 2:30 :bandance;
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I'm hoping they can fix this without any major surgery. Poor Otto, he has dealt with too much. You two just keep getting through each day. You are amazing! Sending good wishes to both of you :flower;
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I'm sure the last thing Otto wants to do is have a surgery of any kind. Hopefully he will feel a little better in a few days so he can go ahead with it. This one should go far easier.
Good luck.
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We just got home a little bit ago and we are waiting till Monday, the Dr also thinks Otto has an aneurysm in the top of his fistula and they could not get him in today and the only way to put him on tomorrow's schedule was to put him in the Hospital tonight and Otto was not doing that.
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Damn! :banghead;
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Here's info, maybe you read it already:
http://ihatedialysis.com/forum/index.php?topic=4287.0 Fistulagram/Fistulaplasty
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We are thinking positive..he will be fine. I was more afraid of the lidocaine than anything else. Monday will give you more info.
Ann
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Lola, I am praying that he can have dialysis soon. I can't imagine the struggles, pain, and frustration you and your family are going through right now. I am praying for patience and strength for you all. Did his hiccups ever stop? Do they know what was the cause? My family and I think about your family often, and they all want me to tell you that their hearts are with you.
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:grouphug;
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Otto is back at home and everything went really well, he will do D tomorrow. Cherpep he had hiccups for 10 days :puke; they tried so many different meds and old wives tales and then they just went away. Otto is hopefully on the road to recovery :bandance; :bandance;
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What's the difference between Nxstage and Baxter cycler?
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NxStage is home hemo and Baxter is Peritoneal Dialysis
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Amy, :grouphug;
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A friend of ours had a minor throat surgical procedure (for snoring) and ended up hiccuping for 3 weeks! Even in his sleep! They said it was due to the anesthetic used - some people react that way. It finally went away on its own.
Amy, I hope Otto is feeling better - you've all been through so much! :grouphug;
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3 weeks OMG Otto would have freaked!!!!!! Thanks for all the Prayers being sent our way :grouphug; :grouphug; If I ever win the lottery I'm paying for a IHD get together :bandance; :bandance;
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Otto just got done D and his filter looked so weird we're thinking it's from the dye they used yesterday ???
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lola, what was weird or what color was it? :cuddle;
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it was black and clotted looking
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Did Otto get a good run or did you get lots of alarms? When Len had to have his graft cleaned out, the dye they used was purple. I hope tomorrow goes better Amy. Keep us posted. :cuddle;
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He had a good run with no alarms, that's why I'm thinking it had something to do with the dye.
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:cuddle; Amy, I'm happy to hear that Otto had a good run but concerned about the clotting issue. Does he get heparin before and during treatment? When Len had his graft done, I believe even the 2nd treatment showed some of the dye in the filter but not a whole lot. Did they tell you what they found, narrowing or clot? Somedays there is too much for us to process. Let us know how todays run goes and please give him a big :grouphug;.
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All went well today filter was a little funky today but not as bad as yesterday, thank God we didn't call cause they probably would have made him come in since they think we still have money to suck from us :sarcasm;
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Otto went in today he is felling like :puke; and every time he's on D it's worse he also has a low grade fever by the end of each treatment, Dr is a little worried. He's having some more test run as he should not be feeling like this, he says it's just like when he was doing in center. I just want my husband to start to feel better :stressed;
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:cuddle; lola, hopefully the test will give you some answers. I am sorry Ottos not feeling well. :(
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Hope they figure something out soon. :grouphug;
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So sorry Lola. :cuddle;
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Amy, I found this article about the dialysis membrane causing a low grade fever. Seems like whatever is causing Otto to feel bad is due to something relating to dialysis itself and something that changed after the transplant. Could the transplant or the drugs the gave him during the transplant process have made him more sensitive to membranes or that did not bother him in the past?
Chronic renal hemodialysis patient with post-hemodialysis fever caused by hypersensitivity to the hemodialysis membrane: A case report.
http://sciencelinks.jp/j-east/article/200203/000020020301A1028547.php
Low-grade fever is one of the well known complications of chronic hemodialysis therapy. We report the case of a chronic renal hemodialysis patient with post-hemodialysis fever due to dialysis membranes. An 80-year-old woman undergoing hemodialysis for chronic renal failure due to chronic gromerulonephritis had a high-grade fever (39.DEG.C.) after every hemodialysis therapy for about 2 years. In order to discover the origin of the high-grade fever, we administered several drugs and changed some of the hemodialysis conditions. Her high-grade fever was improved only by using a membrane made of Di-acetate (M-170D) and this also relieved her general fatigue. This case led us to conclude that hypersensitivity to the dialysis membrane may be one of the causes of fever of an unknown origin (FUO) after hemodialysis therapy. (author abst.)
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I also found this article which talks about the transition from transplant back to dialysis. When you think of all that Otto's body has been through and the drug regimes changing, it's easy to imagine that it might take him a bit of time to feel better. And then there is all the emotional stress piled on top of the physical challenges. I hope he keeps feeling a little better every day. :grouphug;
P.S. He is truly lucky to have you by his side! :cuddle;
I Have to Begin Dialysis Again After Several Years as a Dialysis Patient. Are There Any Issues or Concerns I Should be Aware of Before I Start Dialysis?
http://www.aakp.org/aakp-library/concerns-before-I-start-dialysis/
Answer: Remarkable strides have been witnessed in the transplantation of solid organs over the past two decades. This is evidenced by the reduction in the incidence of acute rejection one year following the transplant procedure and by the improved long-term overall graft (transplanted organ) survival. Nevertheless, thousands of patients find themselves returning to dialysis yearly as a result of their transplanted kidney having failed. The indications for returning to dialysis would be similar to those that led to the initiation of dialysis after failure of native kidney function (assuming the patient dialyzed pre-transplantation, since a small percentage of patients undergo "preemptive" transplantation - not having been dialyzed before receiving a kidney, usually from a living donor). If the patient had been followed closely by his or her nephrologist, the access for dialysis should have been secured in advance of returning to dialysis, either by placement of a peritoneal dialysis catheter if the patient elects to do peritoneal dialysis, or ensuring there is a working arteriovenous fistula or graft for hemodialysis. The timing for access placement in this setting is similar, once again, to that for native kidney failure, when the creatinine clearance is 20 ml/min or less in non-diabetics and 25 ml/min or less in diabetic patients. This point is usually reached only after the patient has undergone a biopsy at some point to validate that there is very little to no possibility that the transplanted kidney can recover sufficient function with additional or continued immunosuppression.
Obviously, the transition back to dialysis following a failed kidney transplant is fraught with change. The most easily recognizable changes are in lifestyle - following a prescribed diet in terms of limiting salt and water intake, as well as foodstuffs that are rich in potassium and phosphorous, depending upon how much residual kidney function the patient may possess. The anemia that usually abates (lessens) following a successful kidney transplant will likely recur if a transplant fails, so a patient will need to go back on erythropoietin and iron supplements. Phosphorous supplements and multivitamins are also likely to be prescribed. A new "dry weight" will need to be established upon return to dialysis as well.
While new medications are being prescribed that accompany a return to dialysis, other medications that were prescribed for the transplanted kidney are tapered or discontinued. Both the transplanted patient and the dialysis patient are at increased risk for serious infections and certain cancers, the former because of the immunosuppressant drugs and the latter for the immunodeficient state of uremia. Therefore, the patient with the failed kidney transplant who returns to dialysis is best served by having reductions made in their immunosuppressive medications.
Most nephrologists will instruct the patient to discontinue their calcineurin inhibitor (i.e. cyclosporine or tacrolimus)drug outright with no tapering schedule. Should the patient either be on azathioprine, mycophenolate, or sirolimus, these drugs are usually discontinued or tapered off over several months. More importantly, should the patient still be on prednisone or medrol at the time of returning to dialysis, these corticosteroid drugs are tapered off very cautiously, unless there is an overriding medical condition (e.g. lupus), which mandates their continued administration. Should the corticosteroids be discontinued abruptly, the patient may suffer from adrenal insufficiency, resulting in circulatory collapse. The adrenal glands are shut down from producing its own hormones while the patient is taking administered corticosteroids over an extended period of time. Some signs and symptoms that a patient may be experiencing adrenal insufficiency, other than overt hypotension or marked low blood pressure, are continued malaise (lethargy) and fatigue, unexplained low-grade fever, weakness, myalgias (muscle pain) and arthralgias (joint pain) and weight loss from poor appetite.
A major concern of both patient and nephrologist that arises with the discontinuation of the immunosuppressives upon returning to dialysis is the possibility of rejection. The incidence for the need of surgical removal of the kidney, or nephrectomy, has been cited to vary between 20 and 65 percent over the past two decades. The indications for such a removal include pain and graft tenderness, otherwise unexplained fever, blood in the urine (hematuria), and a failure to thrive. Transplant kidneys, which lose function within a year following transplantation, are also usually surgically removed to stave off the possibility of other possible complications arising, such as thrombosis and hemorrhage.
The patient who returns to dialysis following a failed kidney transplant needs to play an active role in his or her own healthcare. He or she needs to follow the prescribed diet and medications, stay physically active and keep whatever appointments may have been made for cancer screening examinations (e.g. colonoscopy, mammography, etc.) and coronary disease testing. They also need to report any symptoms to their dialysis team that may be related to their failed kidney transplant mentioned above. Lastly, they should seek out relisting on their local organ procurement organization waiting list or identify any possible living donor to their dialysis healthcare team.
Question answered by Ken Bodziak, MD. Dr. Bodziak is an Assistant Professor of Medicine in the Division of Nephrology at University Hospitals of Cleveland. He was previously at Beaumont Hospital in Royal Oak, MI, where he participated in the renal transplant program as a transplant nephrologist.
The Dear Doctor column provides readers with an opportunity to submit renal related health questions to healthcare professionals who specialize in the area of concern. The answers are not to be construed as a diagnosis and therefore, altercations in current healthcare should not occur until the patient's physician is consulted.
This article originally appeared in the March 2002 issue of aakpRENALIFE, Vol. 17, No. 5.
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Amy, I found this article about the dialysis membrane causing a low grade fever. Seems like whatever is causing Otto to feel bad is due to something relating to dialysis itself and something that changed after the transplant. Could the transplant or the drugs the gave him during the transplant process have made him more sensitive to membranes or that did not bother him in the past?
Chronic renal hemodialysis patient with post-hemodialysis fever caused by hypersensitivity to the hemodialysis membrane: A case report.
http://sciencelinks.jp/j-east/article/200203/000020020301A1028547.php
Low-grade fever is one of the well known complications of chronic hemodialysis therapy. We report the case of a chronic renal hemodialysis patient with post-hemodialysis fever due to dialysis membranes. An 80-year-old woman undergoing hemodialysis for chronic renal failure due to chronic gromerulonephritis had a high-grade fever (39.DEG.C.) after every hemodialysis therapy for about 2 years. In order to discover the origin of the high-grade fever, we administered several drugs and changed some of the hemodialysis conditions. Her high-grade fever was improved only by using a membrane made of Di-acetate (M-170D) and this also relieved her general fatigue. This case led us to conclude that hypersensitivity to the dialysis membrane may be one of the causes of fever of an unknown origin (FUO) after hemodialysis therapy. (author abst.)
The same thing happened to me for six months in 1995. I was allergic to dialyzer membrane. They changed the dialyzer. I am now known as a pain in the butt, because they have to special order my dialyzers.
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When Marvin's transplanted kidney quit working effectively (dropped below 15%), all his anti-rejection meds were stopped immediately and he returned to dialysis (perm cath for access). He was also on steroids, but they were discontinued on a gradual basis (taper down); he was completely off the steroids a month after dialysis resumed. He kept the transplanted kidney (though it wasn't working) for 15 months after he went back on dialysis. Then, it was determined, the kidney was swollen and trapping blood and not letting it return to his system. When the transplanted kidney was removed, Marvin felt better immediately. The surgeon told me (after removing it) that it was almost twice the size as when it was transplanted and should have been causing him MAJOR pain (Marvin described only "discomfort"). Even after 15 months of NO anti-rejection meds, Marvin didn't reject the kidney (and probably would have kept it longer had it not started swelling). I've often wondered how he kept it so long with no Cellcept and Prograf (his anti-rejection regime).
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Amy, we just wanted to let you and Otto know we are thinking of you. :grouphug;
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Well so far blood culture are not showing anything, waiting for other stuff there running. Today they called to say his phosphorus level is 9.2 :oops; and said he needs to be taking his phoslo, HELLO if he eats he does. Otto is ready to throw wall-e out the window. :stressed; :stressed; :banghead; :banghead; Otto is still on some transplant meds only because he still has his old kidney that still works at like 5% or something like that. They stopped his cellcept when he was in the Hospital.
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Otto's pure flow went :puke; he's suppose to get a new one in the morning, although he'd rather just trow the whole thing out the window. He's going to see his transplant Dr Thursday and then his Neph again Tuesday. I'm so sick of him feeling like this, I just want my husband back this sucks soooooo bad.
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Lola, hang in there , I am praying for a speedy recovery for Otto, damn kidneys :banghead;
Lola :cuddle; Otto :grouphug;
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you two need a bunch of hugs! :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Couple more
:grouphug; :grouphug;
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Sending you some LOVE Amy :cuddle;
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Thanks guys you have no idea how bad I needed those hugs, this sucks.
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Special thoughts for Otto and you, Amy. I can't imagine how frustrated Otto must be and you for that matter...Boxman
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:grouphug;
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Otto went today to the Transplant Center and they told him because of everything he went through he may feel like this forever :puke;
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Oh Lola, what a horribly difficult thing to have to hear. Now we just have to hope that that will be just another example of doctors being wrong. When I was 8 months old they told my parents I'd likely be dead in 6 weeks. They were wrong.
:grouphug;
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Otto went today to the Transplant Center and they told him because of everything he went through he may feel like this forever :puke;
Did they look in a crystal ball? That's ridiculous for them to make a statement like that. He went through a big ordeal and it seems very possible that it just may take time for him to recover. I know it's hard. I hope he improves. One day at a time.
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WHAT!?!
There's no excuse for them saying something like that.
I completely agree with Karol. Otto went through a lot, physically and emotionally, and his body was thrown into chaos. Maybe the time frame will be months or even longer to see the improvements when major organs, hormonal systems and dialysis are involved. But, Otto's a strong guy and he has you. Love is a powerful thing Amy and your love for Otto has been evident in every word you have posted. I admire the two of you so much for your courage and the love you have for each other.
Please keep believing in the power of love and positive thinking!
:grouphug;
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Well Otto is feeling the best he has felt in a looooooooong time :cheer:. BUT his Dr on Friday busted him with skipping and that even though he looks and feels good his labs are AWFUL!!!! They even told him they would like to see him doing D 6x's a week and Otto told them flat out that will NEVER happen. He needs to decide if he wants to start with the Home-Hemo or go back in center :banghead; funny how he has forgotten how awful he felt and that the kids and I lost our Otto, they talked about taking a break and doing in center for a few weeks if he is just to overwhelmed. I wish he would just take a break as he is at a point of wanting to just say screw D all together, good thing he loves me and the kids or he would soooooo be done with this. It's hard to even talk to him about this as I can't even begin to understand.
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Lola. you are a Superwoman and I admire your strength. You all have had a tough year and I am sure Otto is tired of it all. Maybe going back to incenter for a break could help. I wish there was a simple answer. :cuddle; :cuddle;
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I'm saying extra prayers for you, Otto, and your kids. Praying for strength.
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No matter what I try to type here, I don't seem to be able to express what I feel when I read your words and think about all your family has been through. You are always in my thoughts and prayers. I hope the spring brings good health to Otto and Dani. :cuddle;
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I hope Otto starts feeling a little better soon. I think that would probably help his state of mind. It's so hard to feel upbeat and alive when so many physical difficulties have made Otto's life so hard lately. This must be very hard for you and the family too. Wishing you the best.
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Well Otto did D 5 days this week :clap; and is already not looking forward to next week. The weather is finally getting nice and he'd rather be out on his bike verses being on D BUT I told him if he continus to be a naughty boy he'll be dead and then no more bikes for him >:D but my smart as$ comments are rubbing off because he says he's pretty sure Heaven has the best Bikes and tracks just waiting for him. :boxing;
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Ha - tell him he's just going to have to sit around on a cloud in a dress, playing a harp!
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Tell that husband of your to behave or :Kit n Stik; .