I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: G-Ma on July 18, 2008, 12:44:53 PM
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Ok, this chicken is going to try NXStage. I guess I will work on starting to self cannulate on Monday. I have a DVD to view this weekend. At least I won't sit around and wonder "what if" but I am terrified of the needles. Nurse today said I should push to put EPO in the lines like they do at Davita so I will. Thanks for all of your support in everything.
Ann
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I hope it works better for you. :grouphug;
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I'm glad you're going to give it a try G-ma. Like so many things, once you get used to the idea and have some success it will seem much easier.
One thing though is about the epo. My understanding is that epo is much better absorbed and you can use about a third less if you inject it subcutaneously instead of through the lines. However, if it's Aranesp you use then through the lines is OK. I used to do the subcutaneous injections all the time and found them to be no big deal. I imagine you'll think the same once you're self-cannulating but maybe not.
All the best with this new step and I really hope it works out for you.
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Thank you Sluff and Monrein. Monrein, you are so very helpful in all you say, thanks about the EPO. Once I have a reason I'm usually ok.
Ann
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Go for G-Ma! You'll be amazed at how much better you feel!
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OMG you are super brave
I have never even looked at the needles
wow
I am in awe of you and anyone who can do their own needles
good luck
you are freakin' brave
I am here for you to amaze me........
:banghead; I could never do that
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Oh no twirl, not brave, no no, I have now watched the DVD of self cannulation a couple of times and tell me...how do you insert the needles with your eyes closed??? that is what I will be doing... :o , I watch and run screaming through the house, then watch again. Not at all sure about this.
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Well bummer...I just got turned down for NXStage....they insist on having an adult go to training with me......oh well....how about a keg of margaritas and a hose????
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Since we have the same problem....maybe you could just move in with me. Wonder if two people can use the same machine? :cuddle;
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I'm sure Davita would be happy not to have to supply two machines buttttt can I still have the keg of margaritas with the hose or do you insist on sharing that too? :rofl;
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Otto is training himself I just have to learn the emergency procedure and I want to learn how to stick him. They even said it was no big deal for him to train alone.
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Guess it depends on the neph who is the director...they said he won't approve my 14 yr old grdaughter...I would trust her more than a stranger. The woman who called said get a neighbor which would be a stranger...they just don't think on all 4 cylinders most days.
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The clinic where we trained wouldn't consider a home hemo patient without an adult "partner." I think that's wrong because there are some out there who could very well handle it solo. (Marvin's not one of these because he can't cannulate himself -- won't even look when I do it.)
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Well this afternoon I got a call from """someone""" at NXStage out of state who apologized for the mis-information I got, said no my partner does not have to be there every day for training and said will get all of this sorted out so I can start training soon. It will be interesting to see how this plays out. Why would each of us get diff info? I have no clue who contacted NXStage about this, my thought is my neph as he was not happy about me being turned down. My self cannu went better today however still a ways to go to be perfect, in my mind at least.
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Congrats.....I knew the margaritas would help
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G-Ma :bandance; I'm so glad things are looking better for you. Otto has been in training for 3 weeks and I've gone 4-5 x's. I had to only go they said to learn emergency take off and I did that today. The other days I went just because.
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thanks for all your info lola..........thx flip....you are next...you can come train with me and I will practice my needle SKILLS on you.... ;D
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My husband tried sticking me ONCE and that was it for both of us. He went through the skin, into the vein, through the vein and into the bone in my forearm. Ouchie. Ouchie. I learned fast after that.
I think it would be way easier to stick someone else because of the two hands thing.
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Maybe the NXStage people are reading IHD!
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oh lord monrein, I was holding my arm and wincing as I read your post. Yes, pelegia, I have been mentioning IHD to ""everyone"" I talk to and the lady from NXStage actually said she reviews this site periodically. It helps to keep spreading the word.
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Well, NXStage has been calling me daily and working on getting me started in training ""yesterday""...she called again an hour ago, said she is flying into Charlotte on Tues night and meeting with Davita and others on Wed...boy do I feel important. At least hopefully people will be getting correct, same info after this. Wish I could meet her but I have D on Wed. I guess they had several of the same complaints from people and sounds like my neph called NXStage and discussed my issue...yeah for Dr. H.
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:bandance;
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G-ma --
You're near Charlotte???? My mom and dad live 60 miles east of Charlotte (Anson County)! Marvin and I are about 3 1/2 hours from Charlotte (toward the coast). You're so close to us! Marvin's on NxStage, too, and he loves it! Let me know if we can help!
Marsha (petey)
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Petey.......and Marvin.......a lot of Davita patients where I go in Monroe are from Anson Co...............please let me know when you come this way so we can meet...I have read everything you and lola have posted about NXStage and some others and am looking forward to finding out if they will approve me this time..the lady from NXStage seems determined to get me in. Today my youngest, his wife and stepson came for a visit and we looked at the list you guys did of what is needed and went... :o I'm not sure if I have room????
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It tucks in tighter than you might think, especially if you have tall shelves. My set up, including recliner, pureflow, nxstage, storage shelves, drawer unit, and extra stack of dialysate prebagged takes up less than half of my closet sized spare room. If I remember correctly, the room is 10 ft by 9 ft.
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thanks jbeany.....now I just have to build half a room :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :clap; :clap; :clap; yes, I dd a funny.......
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G-Ma -- Monroe!!! Mom and Dad live in Wadesboro! WooHoo! You're closer to us than I originally thought! Yes, yes, yes...I feel a trip coming on. That would be sooooo cool!
Okay, the room. We turned a spare bedroom (12 x 12) into Marvin's "clinic." We took everything bedroom-related out (like bed, dresser, etc.). That gave us room to put in a cabinet (Marvin built) with shelves on top... more shelves on the two other walls...a tv mounted in the corner...his recliner in the almost-middle of the room...his PureFlow and NxStage machine next to his recliner...a small sink in the corner (Mom and Dad had installed for us -- makes it nice). The closet in that room is a typical bi-fold door closet. His supplies take up about 2/3 of the bottom of it (I still have some coats, etc. hanging on the other 1/3 and the entire top shelf is full of my Christmas stuff). Jbeany's right, all the supplies come in boxes and they stack as tightly as you need them to. However, this kind of set-up is not always possible.
The couple that we trained with for home hemo didn't have a bedroom to spare (three teen-age children). They set up in the corner of their den with the machine and a recliner. They drilled a hole in the wall to the laundry room behind and ran the water in/drain out lines through there to their washing machine! They stacked, stacked, stacked boxes in the corner of the den. But, then after only three months on home hemo, this guy got a kidney/pancreas transplant!! Double WOO-HOO!
Make do with what you have available! It will work!
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G-ma --- I forgot to add that the only time we're stacked box-to-box is when the supplies first arrive. After a week, the stacks dwindle down. By the almost end of the month, it's not bad at all (because we've used up most of the supplies). But, then a new shipment arrives and we're up to our bellybuttons in boxes again!
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:flower; hope all goes to your best :flower;
thinking of you :flower;
EDITED:Fixed smiley tag error-kitkatz,moderator
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petey...you are not helping...I will sooooo have to build half a room.....perhaps nxstage on the deck huh???? supplies on the toilet..don't need that anyhooo...oops forgot about that need.....sorry guys...just rambling....kitchen doesn't get used much....hmmmm....tent on some beach somewhere...love warm beaches....does nxstage deliver to hawaii I wonder???? hmmm 3 rm tent....I keep threatening to run away....this could be it...the reason....thanks for the flower twirl...I needed that. ok...I'm going to bed...dragging feet and pouting...I want water...oh do I want water...this has been a tooo much fluid day and one more to go before D..............................no pout picture???
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oops...forgot my teddly bear....grabbed him by the paw and dragging him with me to bed....still pouting....
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Here is a teddly bear for you!
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thank you kitkatz for my very own teddly. :cuddle;
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Well all, after many many calls from NXStage and Davita today I am ""starting"" training tomorrow morning at 8:30 am....so why am I not able to sleep??? I am going to try to get my answers in person since each caller gives diff info. Said I need someone over 18 with me 8 days out of the training period but then NXStage lady says no...her nurse flew into town today and will be at training this week too, to help train some new nurses on the staff. I'll let you know as I know more. I'll need all the prayers and luck you can send.
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Hey, G-Ma...I got stuff to make you sleep. Good luck tomorrow.
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Still no sleep...sitting up ready to go at 6am and decided not to go. I feel like I have been steamrolled by this whole thing with nxstage calling all day yesterday and still 90 diifferent answers from them and davita. I called in center and said I'm staying and talked to home hemo and said canceling for now. This training thing it too much stress on me and my family trying to work around schedules and home hemo here is """insisting""" someone be with me 4 full days a week for at least 3 weeks....ain't going to happen so guess I'll stay in center for now. I am so stressed it's unreal....
Flip...please send me some ""recipie"" to sleep.
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G-Ma, I know many people do home dialysis on their own. I have the utmost respect for them. However, especially in the beginning, I would highly recommend you having someone there, especially considering how nervous and stressed you are over this. They don't have to do much except be there to give you some emotional support, or perhaps hand you a piece of gauze, but especially to call for help if necessary. At the very least, you need to be comfortable with this decision. If it's not right for you, that's fine. Just like in-center, there are plusses and minuses. You just have to decide what is right for you. If you do go through training, and then decide you're not comfortable with it, can you then go back to in-center? Maybe you can give it a trial-run by going through training, as long as your in-center optioin remains open. I hope you can relax and be able to look at it calmly. Good luck, and keep us updated with your decision.
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G-Ma, I'm so sorry this is all adding up to so much stress for you but you really must do what feels comfortable and comforting right now and that sounds like in-centre for the present. I hope you can carry on doing your own sticks and getting super familiar with everything the machine does ( no matter that it's a different machine, the principles are the same). The day might come when you want to try again. However, whatever you do please know that we support your decision one hundred percent and want to support YOU even more, were that possible.
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Thank you all so much for the support and your info cherpep today. NxStage lady called this morning 3 times after I decided not to go and talked me into going and talking so asked my oldest son to go along and he was hooked so I am trying this crazy business. He knew the machine by the time we were there a couple of hours but he builds trucks and engines and now loves the fact that I'll be able to go places...I'm still not sure but doing the training..it was only the first day so we shall see. I felt great after D...2nd day in a row, no crashing, no washed out feeling, came home, stayed awake...hmmm...today was ok. Especially after being so stressed all night and this morning. I am so glad I have this place to go and talk to you all. It really helps. :flower;
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I usually take two Tylenol PM and a 2 mg. Ativan. I sleep like a baby every night. Can't you get a friend or family member to go thru the training? I'm sure there is no way they can check and see who's actually there during dialysis. Maybe Bill Peckham will jump in with some advice.
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Thanks flip...tylenol PM give me MAJOR hallucinations....I may just try some """recipie""" from the hills... :beer1; Today I met some corp officers from NxStage....2nd day...my Grndaughter was with me and I believe knows everything..trainer walked her through all the buttons, alarms, connections and fixes several times...I however am so very tired...2 days in a row...I need a week off....depression is starting again..I don't know why and don't know if I want this...family does but....
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:grouphug;
Big changes like you are currently going thru, are hard to cope with for anyone.
I'm new here but wanted to send a hug your way. My husband has been at home for two ? three? weeks now on NxStage. We've had a few bumps along the road-- and I did get really freaked during one day on training. Tiny bit overwhelming-- lots of deep breaths and telling myself it will be okay.
For the most part he runs the show by himself, I hand him tape/TV remote and help out if he has a problem. We live in an 750 sq ft 2 bedroom apt with two teenagers. Storage is a tight squeeze but it works with a bit of creativity.
Teenagers come in handy for hauling supplies, breaking down boxes and hanging bags. Good sturdy workers! Isn't that what they are for?? :2thumbsup;
Best of luck and lots of hugs-- margaritas too?? mmmmm yum
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Thank you so much. It's nice to hear from a NXStage newbie...deep breath....my goal initially was to do this by myself as well, now I'm not sure....I'm glad you joined this site and hugs to you too.
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I talked with Davita today and they didn't say no to the helper deal. I would have change centers and drive 35 miles while I'm training. They said the training would be 2-8 weeks, depending on my comfort level. Then I would go in once a month to see the doctor and have labs drawn.
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Flip you're lucky the training center is only 35 mins from you . It was 6 hr drive from home for us to train for home hemo. We came home most weekends!! It was more than worth the drive and the time training to be able to do dialysis at home.
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They told me that my training would be done during my regular dialysis time 3 days a week.
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Hmmm...flip...are you sure??? Was that Davita/NxStage? If so, great for you, then you would not be so tired like this daily thing. I drive an hour at 7:30 in the morning for only 15 miles, then 1/2 hour back.
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It is Davita/NxStage and that's what they told me. The training nurse is supposed to call me Friday. I'm okay on the in center hemo and I feel good. I just want the extra flexibility and more travel freedom. Right now all I can do is weekend trips which means skipping dialysis on Saturdays.
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Yes, that's why I decided to try this because all I can do is also my days off but I have never skipped so I have never gone anywhere...boring, depressing. Hope it works for you.
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I don't have any ill effects from skipping except a little extra fluid.
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today at training was a "bit" better....I almost crashed again...took no fluid off but machine is so efficient it pulled some..half a kilo..enough to start a headache and the almost pass out bit with washed out feeling...so need to tweak tomorrow again...I am SO OOO ready to sleep in on Saturday. Anyone else have suggestions about the pull issue??? Do you have to fudge the fluid amt?
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G-Ma, half a kilo shouldn't make you almost crash. I've pulled as much as 5 kilos and walked out smiling. Maybe your flow is too high or something else is off. It scares me that you are going to do a solo act if you crash that easily. Maybe one of the other NxStage users can help.
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G-ma - It sounds like there may have been a setting off, I've never had the machine take off fluid without being programmed to. During your training, as you get familiar with the machine, it will be less daunting. I posted every day of my training here http://ihatedialysis.com/forum/index.php?topic=5229.0 I call it the good, the bad and the bloody.
I hope that each day is smoother.
Best,
Anna
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thanks flip and meinuk...I will be reading tomorrow evening....and no matter what or where the machine is that I am on my body crashes within a fraction of my dry weight....beat my sensitive body with a fluid stick... :rofl; :rofl; generally...I am fine, feel ok, do standing bp etc...leave and about 1/2 hr away a headache starts and 1/2 hr after that the passing out begins...I had a few months vacation from this feeling but it is back....but today I do think there was a diff of opinion between the trainer from NXStage and my trainer nurse......I am learning with a new Davita/NxStage trainer...she has been with Davita a long time but just started with the home hemo unit..appears to be very good and caring...is great with cannulation..will be a good teacher for that..was a nocturnal manager. There appears to be a certain way..I have no clue...to trick the NxS to think you want to pull or else you will get an alarm...those of you on NxS I'm sure know this backward and forward...hopefully some day I will too.....
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The machine wants enough fluid pull to offset the rinseback. When I have to run without fluid pull, I just set it to .3, and then shut it off after I've started running.
The NxStage does seem to pull fluid at a higher level than it is set for. I generally end up several 10ths under what I set it to pull, and that's in addition to drinking a full cup of ice water every time I'm on the machine.
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I always hook straight up. That means I get saline as soon as the blood starts flowing. If you're close to dry weight when you start, the initial blood pull can cause dehydration and make you crash.
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First week is ""down the tubes""", I slept in and have been crying since.........not a good day....feeling let down and lonesome...my """"friend""" called and while we were talking said "Oh, I forgot you are on dialysis, you always sound so good",. and we talk 3 or more times a day...now, today I hate him too. This is the same reason I don't talk to my sisters and brother.....they don't """remember""" my life. No crash yesterday but we upped my dry weight 1/2 a k and ran 450 for 2 hrs 12 min...it's unreal how that machine changes the times depending on all the other factors..this I like, and it pulls excess fluid immediately and then just cleans blood the last hour.
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:grouphug;
You can also adjust the UF so that it is spread over the 2 hour run. The lower rate makes you less prone to crashing. If I have .8 to take off, I set the UF pull to .4/hr - it's a lot gentler on the system that way.
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thank you so much JB..that is what I will check out. I wonder if that is what is making me so emotionally tired...all this is new to the system and running differently etc? :thx;
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:bandance; Today is a good day...first one in ages that I have not been hungry all the time, a little tired but not that exhaustion..I have purposely not had a lot of fluid just to try different things with this.......I notice I'm not going across the desert thirsty all the time now and NxStage trainer said it's because the dialysate is lactade based instead of the soda based which is so salty as well, so they shove salt in and wonder why we drink...duh..........my oldest son has so adopted NxStage that I think he talks it in his sleep...he was with me the first day and set up PureFlow and made a batch, took the books home and memorized them...anyone within hearing range of him now knows how to set up PureFlow and the cycler...all his drivers know..and he is training his brother when the equip comes home...and he wants to go back for setup and takedown so he can do that...so remember when I thought I didn't have anyone to train with me,,,I was wrong as all the kids have taken this to heart and have decided WE will do this and it WILL work. Thank you to my family and the online family. :thx;
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I'm so glad you had a good day G-ma. Your kids sound so nice, caring and supportive. Wanting to know everything about the machine is such thoughtful and practical support that it makes my heart sing. It also means that when you talk to them about stuff you're going through they'll have a clue and you can have a real conversation. :guitar: :cuddle; :beer1;
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:puke; well...crashed and burned today...an hour after I got home from NXStage a migraine, cramping, nausea etc...crawled into bed, just got up...do I have to do this tomorrow again......grrrrr.....everything seemed to go well and I felt fine...I think their little floor scale is messed up and I only had 1.4k to pull...I don't know...my oldest son ""stopped by"" and took his pureflow test and set up two packs and passed with flying colors...he has memorized those books...next week he wants to do the setup and takedown and probably wants to learn to cannulate me too. I think he has another career coming. How about building a truck with its own dialysis unit? I did tell him to work on inventing an iv pole for short people like me, one that is hydraulic and I can step on a pedal and raise and lower it. Could happen.
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G-Ma, if you can, invest in a good medical scale. We had horrible problems with the centers scales and once we got ours, we never used theirs again. I think it costs $300 but it was well worth it in the end. Hope tomorrow goes better for you and give your son a hug from me. Good for him. :cuddle;
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I will give him a hug...if he ever posts, he is TowDaddy. He is a member and reads everything he can about NxStage, hopefully someday he will make himself known to alll the great people. I talk about IHD all the time. :bow;
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G-ma so glad your trying Nxstage. It is soooo overwhelming at 1st take it from the "newbies". I don't get why your crashing though, Otto only has crashed once since being on Nxstage and that's because you tried to pull to much fluid on a Monday. In center he crashed every time.
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I had 5 months of absolutely no crashes so "almost" forgot them, boy what a wakeup call. ???
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It's slowly getting better???? Headache still but nurse thinks I'm DE Hydrated. How funny since I had to watch fluid intake before and now I'm not drinking enough, not thirsty on NXStage. So, tonight I'm drinking...not the good stuff tho...my daughter in law cannulated me today. She was so worried about hurting me that finally I said, just pretend you are really p_ _ _ _ _ at me, she laughed and went to work. Her only problem being my fistula was deep, rolled and not pumping hard today but she did great, set up, take down and all. But still too much Heparin so arterial site went into gusher mode after pulling. I gave myself my EPO today which was easy. BTW...NxStage regional trainer said had never been told about IHD so has checked us out and really liked what she saw, so hopefully she will help spread the word. She agrees that it is sometimes more effective for us to give each other information and help. Tonight I'm trying to figure out """where""" I will put all the boxes. Now I'm starting to look forward to NOT having to leave the house every other day for an appointment I really hate going to. :2thumbsup;
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G-Ma,
You're doing great!!! And you have so much help from the kids and their spouses -- that makes you lucky. Hang in there, chick! This will work for you -- I just know it.
Yes, you really CAN drink more on NxStage -- Marvin's finally understanding that (after 13 months on home hemo!). I think you'll find that with time you will know exactly how much to take off, how everything right (and everything wrong) feels, and what's the best thing for you to do with each treatment (though you'll probably never figure out where to put all the boxes -- can't help there because we still don't know!!!! :rofl; ). I'm proud of you! Keep it up!
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It sounds so challenging and yet you are doing it. Hope it gets easier soon. :grouphug;
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Oh thanks petey...I really needed to know that tidbit...my d in law told me today that I may need to use my sewing room as a closet......grrrr icon really needed here....I have been looking forward to using that sewing room for sewing when I feel better but guess need to share it now with NXStage. How is school going? I think you have probably started back huh?
Ann
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Thanks pelagia...yes, more challanging than I ever thought and thank God for my family stepping up like they have.
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I'm glad it's going better, G-Ma. I'm putting NxStage on the back burner for a while. I didn't like a lot of the stuff the local Davita trainer told me.
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like what flip??? remember they told me circles of stuff too....
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I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.
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Keep it up G-Ma. You're really going to enjoy not leaving the house to dialyse and no waiting.
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I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.
What, are they just trying to discourage you from starting at all? Most of that is completely wrong.
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I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.
What, are they just trying to discourage you from starting at all? Most of that is completely wrong.
Yep...you're getting some misinformation -- or at least, that's not the way it works with us. Max removal for Marvin is 3.4 kilos per session. CAN turn off UF any time. Buttonholes are great!! (use them and love them), blood flow rate is 450. Treatments run from 2.5 to 3.5 hours (depending on fluid on -- Marvin's average is about 2.45)
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I did find out that they only have 2 people on NxStage and they try to steer everyone to PD. I guess they make more money on it.
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What?! Flip?! What are they talking about? I take off an average of 2 kilos per session, the other night I took off 3. My average time on the machine is 3 hours. My clearance is great, my labs are great - is there another clinic you can check with for support?
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That's horrible flip. It has to do with the comfort of the trainers, and so you are getting screwd for their inability to change.
Anyways, G-ma, when I started NxStage, the center sent me three medical scales. I will happily send you one, let me know here by sending me a PM, and I will mail it to you.
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Thanks wallyz...I'll let you know......flip..wrong wrong...even I know most of that is wrong...I am running at 500 now on 15 needles...start at 200 for a few min and today I'm great...no headache..upped my dry weight .5 kilo and forced myself to drink. If you want the name and number of the NxStage """person""" that got this sorted out for me, pm me and I will give you her info...a fantastic person and she will probably fly into where you are and get this sorted out..NxStage wants training all done on a ""case by case"" basis...not all in one box. I can tell you that you will be happy with what she tells you. Next week I think I'm going to start working on buttonholes, today the nurse followed me home and got my water sample. My dau in law cannulated me and did fantastic so I have a back up with that and NO headache so I can study. I am so worried about not remembering stuff and I keep making notes. Flip..serious now...if you want to train in Charlotte, I have a couch and a recliner free for your use and I think you would be thrilled with the trainers. Think about it and let me know. I think you are only af few hours from here. Whooppeee...we got to bring home the hoses today...what a thrill huh petey and lola???? should I name them too?? :rofl; :rofl; :rofl; ok, now I'm going to work on my storage problem.... still waiting for my grrrr icon????
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I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.
Bull ca-ca...
sounds like they are giving you the story and dance to push you into choosing THEIR treatment of choice.
We ran into an issue when hubby first looked at home hemo. Coming from a Fresenius center to a Davita training site, hubby said he wanted NxStage.. they had someone look at our electrical (said they had to install a dedicated GFCI outlet) and storage issues to get approval. That tech said we would want Nx Stage because we really had no room for the Baby K, RO tank and mountain of supplies compared to NxStage.
Neph had to sign an order saying he needed more dialysis. She signed it but said it was technically illegal for the Davita center to require the order to begin with.. this was all tied with billing. The director said they would not get paid unless neph signed the order.
Then we wait.. wait wait.. to hear a call back on the VERDICT, can he be allowed to do home hemo. Director doesn't call back and finally we leave a ton of messages.. "Oh yes, I think you will do nicely on the Baby K!" but umm that's not what we want? ???
Then he said they couldn't adjust their training schedule to meet hubby's needs. He would have had to miss student teaching for 4 weeks.
Told them we would have to wait until after graduation.
Ended up we moved to CA, moved back to MN a yr later and called another Davita training center. Totally different attitude, when do you want to start? No need for anything different for electrical, our choice of machine, no weird demands for billing. :thumbup;
Funny thing.. they are actually run by the same clinic as we originally went to.. this one just opened a few months ago. :urcrazy;
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When I first investigated home hemo, I was at a Fresenius clinic. We went and spoke with the coordinator/trainer, and she told us that we both (patient & partner) would need 6 weeks of training minimum, and that the training would be from 8am to 5pm, every day. There was absolutely no flexibility with the training schedule. So, in other words, my partner and I would both have to take off 6 weeks of work in order to get trainined for home hemo. That was ridiculous!! They only offerred home hemo on those big Fresenius machines, and those machines do require special electrical and plumbing changes at our home. We walked away feeling pretty hopeless.
My neph actually found the NxStage solution through Greenfield Health Systems (I think they are local). Hallelujah!! No electrical or plumbing changes were necessary, training for 3 weeks, half days, and my partner was not required to be at every session. The nurse came to our home for our first home hemo session and basically just watched us do our stuff, and filled out an evalution based upon our independence and setup. It could not have been a better experience. Within a month, I was doing home hemo.
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This is strictly personal opinion and IHD need take no responsibility for my statements:
If you are an administrator of one of these places that is constantly finding ways to make it difficult for dialysis patients to take control of their health and you happen to be reading this, please take note. We can talk to our local legislators. We can go to Washington. We can mobilize the media. There is strength in numbers. All it takes is organization. The internet is a powerful force. Do you want your clinic to be singled out? Dialysis is difficult enough without putting dinosaurs in charge.
Please read this and then pass it along to your supervisor.
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OK, 2nd week is down. Nurse cannulated me today and had to dig, sure wish my dau in law had been there, oh well. Grndtr and I did the set up and only stumbled once so ok. I'm still sure I'm not ready to do this alone at home yet but at least I'm remembering things which I think is good. I met the neph yesterday who said training is as long as I need, there is no set period, generally 3 to 6 weeks, but wants me to be comfortable with everything. After I have setup and cycler down pat they will start training me on my button hole since we are having trouble keeping my access from rolling. Hopefully next week will be a walk in the park. Have a great weekend all of you.
Ann :cheer:
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When I first investigated home hemo, I was at a Fresenius clinic. We went and spoke with the coordinator/trainer, and she told us that we both (patient & partner) would need 6 weeks of training minimum, and that the training would be from 8am to 5pm, every day. There was absolutely no flexibility with the training schedule. So, in other words, my partner and I would both have to take off 6 weeks of work in order to get trainined for home hemo. That was ridiculous!! They only offerred home hemo on those big Fresenius machines, and those machines do require special electrical and plumbing changes at our home. We walked away feeling pretty hopeless.
My neph actually found the NxStage solution through Greenfield Health Systems (I think they are local). Hallelujah!! No electrical or plumbing changes were necessary, training for 3 weeks, half days, and my partner was not required to be at every session. The nurse came to our home for our first home hemo session and basically just watched us do our stuff, and filled out an evalution based upon our independence and setup. It could not have been a better experience. Within a month, I was doing home hemo.
EXactly what happened to me. However the new Davita clinic will look into home hemo for me now. We shall see what happens. I will be damned if I am going to give up my job for dialysis. Ain't gonna happen!
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Keep fighting for it kitkatz...
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:cheer: :cheer: G O G-MA G O :cheer: :cheer:
Flip I think I nedd to come there and :boxing; :boxing; :Kit n Stik;
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OK, 2nd week is down. Nurse cannulated me today and had to dig, sure wish my dau in law had been there, oh well. Grndtr and I did the set up and only stumbled once so ok. I'm still sure I'm not ready to do this alone at home yet but at least I'm remembering things which I think is good. I met the neph yesterday who said training is as long as I need, there is no set period, generally 3 to 6 weeks, but wants me to be comfortable with everything. After I have setup and cycler down pat they will start training me on my button hole since we are having trouble keeping my access from rolling. Hopefully next week will be a walk in the park. Have a great weekend all of you.
Ann :cheer:
:clap;
woohooo way to go!
Once the buttonhole is well established things will go smoothly-- and quickly!
Hubby had existing buttonholes before we started training, it's routine procedure at the center he had in California. Once they were established he did his own sticks (in center) -- really all he needed to learn was the machine and making batch.
After awhile, setting up will seem like an easy routine. You will be very familiar with all of it before going "home".
Took us 2 weeks and 2 days of training, nurse said we were at a tie for the shortest training period. It helped to read posts here, I knew what to expect and passed it along to hubby. But in some things I think we went a little too fast ,thank goodness we have the machine manuals and training book handy for those pondering questions..
Now which tube was it that has to clot before spinning??? Flip Flip Flip ohhhh right.
And the always fun one.. what the heck is alarm code # and how do I fix it eeeeeeeeeeeeeeeek!
Flip Flip Flip-- ohhhhh not a big deal afterall ;)
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Thanks lola and funnyg...generally I love a good race but not this one. Still have that big fear monger looking over my shoulder. I'm writing and rewriting my notes to try and remember.....grrrrr....
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G-ma. I found this grrrr for you! It's clearly grrrring, but kinda cute at the same time.
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Thank you so much...I love him... or her.... grrrr...now how do I save to use???
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I have a mac and when I click on the little symbol, it downloads. Don't know how it works on a pc. Then it can be used as an attachment.
To get it up to the top with the other emoticons for inserting in text when composing a reply will involve an administrator.
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Administrator...please my grrrr???
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Wellllll week 3 begins and is this Fri the 13th????.........all the way to Davita In Home this morning...30 min, I talked myself through the set up...alone today and was really going to get this down.........welllll I walked in, Trainer Sargent was there, said you are all set up, we have to be at a meeting at noon so have to have you done....within 5 min she threw the needles in and yes I was home by 11.....I guess tomorrow is another day, and then my trainer found out she is clueless about what all to train so I guess she felt like a..you know what...I was supposed to have been doing 2 tests a week, had no idea so told me to come home and do 6 tonight....sure, and when pigs fly????? I am going to sit down and relax first.........well this is relaxing of a sort...ranting and raving....... :Kit n Stik; Tell me why don't they TRAIN the Trainers before they throw a patient at them? Now they are pointing out that I am the first person my trainer is training...yipeee gum drops. :clap;
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OK, another week down and trainer thinks I'll be done a week from Monday and this past week I feel all is starting to click and I feel so much better...yesterday after D, took my grndtr to a univ an hour and a half away to pick up a friend, then drove home, spent the evening with them and then spent all day today with my dtr in law and other grndtr at Concord Mills Mall shopping and walking the whole mall a couple of times. I have not done something like this in years and I'm still sitting here talking about it all and havn't even wanted to lay down, so when I think about it I really have more free time even tho this will be 6 days a week...I'm not sleeping for hours after a treatment or all day between treatments. Whooo hoooo. May even try line dance classes that I have wanted to for years. :clap;
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great to read how well it is going. :cuddle;
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My nephrologist has refused to okay my solo act. What's my next step?
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all those people you go camping with...take one of them a day to training...nxstage does not come out and check if you are alone, they just say you have to have someone with you...wink wink..you know. Each person can train on diff things like my family did..none have been there all the time and I went alone a couple of times. Also, NxStage will also help lean on the neph. In my case they leaned on Davita which in turn is the neph since I had to switch Dr's. In center Dr had said I could D alone but Davita neph said no....As far as they all are concerned I will never do my D without someone else in the house and yes, I feel safesty that way but if I go to ND for a few weeks I just have to train someone how to help me with is no problem..in my case, hold this ()*&*() vein and then run along. My training was 8:30 to 2:30 the first 2 days and since that has been 8 am to 12:45 and I'm going home.
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All my contact has been with Davita because they have the only home hemo training center in this area. (they only have 2 patients on NxStage)
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Read what I have said before flip...NxStage is trying to sell equipment...they have teemed with Davita and if you are getting nowhere with Davita it is in your best interest to contact NxStage..one reason being..they have many more centers and want Davita to treat every patient individually...not alike as a group and can make suggestions (strong ones) to Davita on what to do for their patients. But if you want to sit back and take your no...go ahead.
Ann
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It's still hard to forget that Davita owns part of NxStage. Everyone I've talked to tells a different story. I've heard that Fresenius is working on a portable dialysis machine similar to NxStage.
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My neph's office doesn't work with NxStage, but I called them on my own. I have two reps that I have contact with. One met me at the center in Durham and showed me the set-up, met with patients who were training. She emails me regularly and wants to set a meeting with my neph's office to "get them on board". The office in Durham does say Davita on the door. My neph trusts me and knows me well enough that if I decide NxStage is what I want,he will support me. Flip, call NxStage or email them directly just to get information. Thanks G-ma for sharing your training with us. It really helps to hear how well you are doing. :grouphug;
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Well, today life sucks....not NxStage, I just didn't want to horn in on anyone elses arggggghhhhh....lab results sucked and I am NOT doing anything different than last time, just eating less because I'm not that hungry, not eating anything different or drinking..........the only thing diff is those d___ other binders Fosrenol.......and mail order pharm sent 6 mo worth and I don't want to take them any more, I want Phoslo back, no one knows why they switched.....now got another order of expensive Sensipar and should stop that.........phos sky high, albumin low, hemog low...losing blood during training...took double EPO today...possible iron next week...more labs next week.....I want to run away NOW to somewhere nice, calm and without dialysis.
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:waving; :cuddle; :waving;
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Oh G-ma, I hope that what is happening this week is just a part of your pathway to success!
P.S. Phoslo is calcium acetate and Fosrenol is lanthanum carbonate. I don't think the mail order pharmacy has the authority to switch those. Have you called to complain or get an explanation? It's their mistake and they should rectify the problem. You might just mention that you are going to report them to the XXXX. You need to find out who regulates mail order pharmacies in your state. Is it NC? If so it could be the NC Board of Pharmacy, see http://www.ncbop.org/
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Sorry...I stated that badly...the Dr. wrote a Rx for Fosrenol 2 months ago and mailorder sent 6 mo supply so I would have to dump that if I can get the Dr to give me Phoslo again or is the calcium whatever the reason for the change? Nurse didn't know so as soon as I see neph again that will be the first question. It was the neph in center that made the change but they all work for the same group. Today I feel like a Guinea pig..
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Hi G-Ma,
I'm on NxStage too. My nutritionist had me switch from Phoslo to Renagel because of the calcium in Phoslo. I take three 800mg Renagel tabs per day and it works well for me
Robin
PS Hope your labs (and your days) improve soon.
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Thank you Robin...I'm on my first 3 day wkend...I can't believe no D for 3 days???? so I'm trying to avoid fluids etc...boring. Tues is my final test...pray for me everyone so I get it...trainer said I have to have a perfect score to graduate so now I'm worried about that. That's me...yeah I'll be the presidential worrier.... :rofl; :rofl;
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Hang in there G-Ma, good luck on Tuesday :cheer: :cheer:. Flip I'd find out what Dr follows the Nxstage pts and talk to him. When Otto went thru training we made it VERY clear to them that I would not be there everyday and they were fine with it. :flower;
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If I remember right, the final test is "open book", so you shouldn't have any problem with it, good luck anyway.......
Tom
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Thanks....however...I have a brand new trainer and she is trying to outdo the other one...........grrrr......some things I have been double and double checking...... :Kit n Stik;
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G-ma you can do it! :cheer:
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thanks I needed a cheerleader today............they got me used to every day D and today is my 3rd F Day off and I feel like S, even with staying off fluids etc.......... :puke;
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I think I might have missed something, but why are they keeping you off dialysis? My center makes a big deal about never going more than one day without dialysis.
Robin
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Yes, ND may have been poor in dialysis but they insisted on no more than 2 days off.......and here doesn't seem to make a difference...apparently the trainers don't work on sat, sun or labor day, therefore who cares about the patients.....trainer told me to go to the er if I don't feel good.......yahoooo......oh that's right..the trainers work for davita....must be the difference...they make the rules just don't have to honor them.
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O I so sympathize with you G-Ma. I dialysed Friday and then today (Mon) and the two day gap kills me. Three days would be hell. CRAZY system is all I can say. When you're home, you'll be in charge. Yeah.
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The nurse who trained myself and hubby for nocturnal would not let hubby go anymore than 2 days without dialysis. ( he wouldn't anyway!!!) When she is training and a holiday comes up she works that holiday and takes a day off when she isn't training!!
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Hope you feel better today! i had to do that when my graft clotted once, so I know how miserable you feel!
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OMG..... :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; .........today was a day from H. at Davita..................I graduated and if I had not I would have gone back to incenter...if I had known how the day would progress I would have quit. Did my D....took the test...closed/no book...trainer had very little clue on what to send home with me and old trainer and secrtary did NOT share their knowledge with her...she called plumber, made arrng for him to come out...he got here and no unit was here yet so he could not do anything...she did not know this but the other people in the office did.......she told me a NEW cycler would be delivered to me..ha ha...she called when courier was on the way and apologized all over the place because it was not a new cycler and was not clean...WTF???? said I'll clean it in the morning..so you put it in the warehouse dirty, used, don't clean it or cover it or store it properly...I was told over and over not to let lint or anything inside the cycler...guess what??? oh yeah...my son opened the door, put a finger inside and brought out a load of dirt/dust...stupid me did not want anything that dirty in my house so I cleaned the outside..should have left it the way it came but I know how it looked...yes, call me not a happy camper....oh yeah, Davita in Charlotte doesn't provide recliner as I said previously so today I asked well do you have a used one? Oh NO we don't have any used ones but you do need one...out of whose pocket???? not mine.....and big surprise...Davita doesn't provide a ..get this...thermometer!!!! so I had to go to the drugstore and purchase one... oh yeah, the pureflow chassis was obviously WELL used and stored dirty and has a broken hinge on the bottom so door doesn't close correctly...got a load of stuff together for me...did not use a checklist and other trainer periodically asked did you give this or that??? well, son and I got everything put away tonight and no, ZERO, PAKs for pureflow but 3 cases of saline and only two days worth of dialysate...yes, some day we will laugh, just not tonight......I'm going to call NxStage and see if they would like to know what kind of equipment or how dirty the equipment is being delivered with their name all over it...wonder if they will be ever so proud....Oh yeah, they all came in laughing and smiling and asked "how was your weekend"....I said "how would yours have been if your kidneys had not worked in 3 days?"...do you know they did not mention the weekend again...............OK...I'll quit screaming now and go to bed...maybe Ambien will work tonight....trainer is supposed to be here tomorrow morning at 8 am...doesn't know she better be bringing dungies.....I will NOT help her clean that stuff. :rant;
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Wow, I would be on the phone to NxStage ASAP, there is no excuse for dirty, broken equipment, and I'm sure NxStage will not accept that kind of situation. Also tell them about the trainer situation you had to go through, I'm sure NxStage again will not be happy with it......
Tom
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That is disgraceful G-Ma. I would document this situation in writing and send it to anyone who might have some power to reprimand (read fire) people. Too bad you don't have photos to accompany the disgusting description.
:Kit n Stik;
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Thanks Tom and Monrein, actually I just hit send on the documentation and email to my contact at NxStage. I called her this morning at 8 AM, she is shipping a new chassis and wanted instant contact if there was trouble with the cycler. Training nurse had come out and cleaned on cycler and chassis from 7:30 AM to 11:30 AM before I could start my run. There were a couple of alarms but nurse was able to take care of them, they were due to the dirt etc. Run went good. Scale did not work, lots of items from Davita were missing so nurse is coming out tomorrow morning again bringing supplies and watching a good run and cycler one more time. I found out that because I had a forced Monday off I have to go at least through Monday to get another day off...poor arm.. ???. New trainer also had told me I could do 3 on, 1 off for my runs and now found out, no no...have to do 6 from Sun to Sat....grrrr.....Have a good night all.
Ann
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Well, NxStage said yesterday that they would send out a new chassis as on this one the door hinge is broken and today the new PAK is expired.. :rofl; control panel is shot so trainer called and Monday I get a new chassis and control panel and we had several alarms that we could not get out of on the cycler, probably still dirty so trainer called Davita and they will bring out a new cycler next week, hopefully we can limp along until that time...life is so much fun.........today Catheter was rrrrippppeeedddddd out...8 shots of Novacaine and still felt like they pulled my spine out through my chest.....the Dr. said it's really deep and lots of scar tissue..it was in too long. Did D after Dr. appt and started fading away an hour into D so discontinued now for today, taking a pain pill and to bed..............I LOVE NXSTAGE finallly.....don't have to leave the house, take my time setting up etc etc......... :waving;
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I think a good old fashioned butt whipping needs to happen. You may borrow the stick! :Kit n Stik; :Kit n Stik;
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ohhhh thank you...the coveted stick....you are my heroine :bow; :bow; :bow;
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Well I tried...yesterday cut short as venous pressure was high and couldn't get the needle changed and today on first try arterial was too high and I couldn't get it to change, 2nd try venous clotted so pulled and held both, dau in law tried for 3rd stick and vein rolled on arterial and infiltrated so I said quit...I will try tomorrow and if no luck I have decided I will go back to in center...I wanted to do this myself to be able to travel but this rolling vein is beyond me so might be time to give up...I'll know tomorrow. I am so very tired of it all today.
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It's sounds frustrating but you really have come a long way. :cuddle;
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and at least you know you tried.
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Hang in there, G-ma! Marvin has rolling veins, too. I place my thumb and pointer finger (left hand) on both sides of Marvin's fistula as I'm cannulating him with my right hand. This seems to help "hold" it in place. Now, I don't squeeze it or apply a lot of pressure -- just kind of firm hold. Hope this helps.
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Thanks petey, but I am sticking with my non dominant hand and have to count on someone else holding the vein so I'm not feeling it like I would if I could hold and stick.............that seems to be my big problem so I don't know what to do....or how to change this......... :Kit n Stik;
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Just wanted you to know I was thinking of you. I hope it all gets sorted out soon and you can stay on the NxStage. You are really giving it a good try. Hang in there! :grouphug;
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That first week at home is usually a bitch. Take an in center treatment if you need it, but give it a month of trying. Daily really is worth it.
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Thanks all, yes I promised my kids I will try a little longer and today went very well....just need to have help corralling that crazy vein. Got my new cycler today and nurse finally came and got another sample from the new chassis so another week on bags and hopefully it's on to PureFlow then. I'm trying to stay positive.
Ann
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:rofl; :rofl; :rofl; Yes, today was H _ _ _, thanks to Davita and NxStage...my run was very good...I ordered more dialysate on 9/8 and guess what, nothing here yet, faxed in an order on 9/9, nada....called this morning, was told oh she didn't put the order in until yesterday...well I'm out...ohhh ok, it should be delivered on Monday...WTF...again....called back asked for my rep, not in yet, called in an hour, is in but insists she put the order in on the 9th and will find out where it is being held up and told me to go to Davita and pick some up....never called back...I called my nurse, told her and oh yes no problem, come in and pick some up so I told her what else I was short on since I'm driving 1/2 hour to pick up dialysate..no problem, come on. Finished my run, drove to Davita, no one answers the doorbell...no one, 15 min later, no one. 1:15 pm I called Davita, got the answering machine...finally called the on call nurse..head trainer answered...said "why would you come to the office today?" duh...said that is not how we do things...duh...finally my nurse got on the phone, apologizing for about 10 min, "forgot" I had called..."forgot" I was coming.."thought" someone else would take care of me and both trainers took the center director out for a surprise birthday lunch..wasn't that just too nice?..now said she will bring my supplies right out to my house...I drove back home, another 1/2 hour...more gas...my son is now going to call his attorney for advice and the state health dept about the dirty equipment....by this time NxStage is calling fast and furious...they will overnight dialysate, don't know why this was not offered this morning...finally at 4:15 nuirse and director arrive with dialysate and want to be buddies...director keeps saying what can I do to make this right???..NOTHING is all I said each time. You are good at doing that...she then had the balls to say that my son should not have had to put everything together and connect everything, that is Davita's job....she finally made me laugh as we all know that is a bunch of b_ _ _. They finally left, NxStage called again, gave me the name of a different company in Charlotte that uses NxStage so I can call and check them out so we shall see. I hope you all were having a much better day.
Ann
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I'm so mad right now on your behalf that I could spit further than a camel being forced to get up. The hard part of home hemo is not supposed to be the bureaucratic run around BS. I know that it'll all work out in the end but that should not be happening to you. :cuddle;
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I all can say is WOW!!! That is totally unacceptable!!! Hope it will only get better after that B.S.
Good Luck!!
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Thanks monrein and Jay...no that should not happen to ANY of USm, which is why my son is pushing every button he can now. Go Ron. :clap;
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G-Ma, Read this entire post tonight and give credit to you and others who have the determination to dialyze at home. I've never looked once while being cannulated and it's been almost a year now. Doubt I ever will. It makes funny pains go thru my body just thinking about it. As much as I dislike going to in-center, I'm going to try to hang with it until I get my transplant call. I admire your tenacity though!
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Wow G-ma - that is really ridiculous! Luckily they finally showed up but it's scary to think what would happen if you couldn't dribe or weren't so assertive. I hope you get a better supplier. :cuddle;
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Good Luck My mom uses Nxstage! :2thumbsup;
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I would set my letter writing husband on their asses! :Kit n Stik; :Kit n Stik;
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I am going to talk to the "other" home center in Charlotte.....Yesterday I had my fistulagram, piece of cake after the valium salt lick, less than 50% was open on this new fistula and nurses should have seen the red flags which I now know as the surgeon thoroughly explained them to me, including the hard pulse, excess bleeding and wheezing sound.....and they had me believing that was all normal...too funny...I spent this week freezing on dialysis and couldn't figure out why but it appears the nurse did not connect the warmer all the way so it was going off and on..more off...and when we finally saw it the line was cold...I was sure there was ice going through my veins and my g dtr kept piling blankets on me...called nurse who said "well if your grandma is really cold just unhook her for today"...really cold wasn't even the word..and I kept forgetting what words to use when speaking...this was Thursday..so I made sure the warmer was on and working for Friday....Friday then, my NEW cycler which was set up Monday..started this rythmic chirping or sqeaking, same speed as the pump no matter what the setting...I was willing just to pour some WD40 over it....."is there a black cloud over my head all the time?".....this is beyond funny already....called the nurse who had never heard of anything like that so called tech support at nxstage and technician has never heard of anything like that but is overnighting a new cycler...oh god, another setup and huge box in the living room. I am going to use the cycler again today and if it quits I will for the day too..This bad "cycle" has got to end....I am thinking positive about this....I hope you all have a wonderful weekend, I plan to. I have decideed I am going to spend most of my Sunday in bed with a cozy quilt, teddly bear, book or nintendo or the sandman and get some recuperation.
Ann
o get better...right???
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You have just got to learn to check everything yourself. You can't trust nurses to get it right. I love my home hemo nurses,but I learned that they make more mistakes than I do settign up the machine, probably becasue their life and comfort doesn't depend on it. Keep plugging away, keep focused, and keep learning.
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Thanks Wallyz....And the beat goes on...like the song..however in this case Davita experiences go on....First day on PureFlow at home...set heat at 12 like I was told but cold..my temp started at 97.7 and an hour into D it was 96.2 with setting on 14....called dialysis and they didn't know what the max temp could be so said they would call the NxStage Nurse...fine...called back and said not over 16 to keep Red Blood Cells safe so we said fine...set it on 16 and Davita Director from H_ _ _ said where is your caretaker...brainless me said right here...my granddaughter and she started yelling at me...yes yelling...said you signed papers saying you would not dialize without an adult present...ummm...no....just for training as they were and training nurse knew the scoop and did several practice runs with g dtr and she has had to do a bolus of saline and emergency rinseback so I know she can do it and anyone can call 911...then the Dir from H made her mistake by saying I was there every day and that didn't happen...oh yes she did...I stopped and said you were very seldom in the office let alone in training...(that was a complaint from training nurse)...but I didn't say it..seems like Dir is more off than on....she then yelled "you can't do nxstage because you don't have an adult partner" at which point I just disconnected..no more. I called the "other" home hemo center in Charlotte which is an independant, one nurse and busy, talked to the nurse, she can see me tomorrow, said only paperwork is needed to transfer, will call Davita and get the info she needs and should be painless...oh yeah. Another letter to NxStage with details and 5 min later a "damage control" call from Dir from H at Davita...telling me the plumber would be here within the hour to fix the shoddy line job he did..and she was trying to be so very friendly. I said fine and disconnected...at 2:30 a man delivered a new cycler and at 3 the Dir from H called and walked me through programming the new cycler...I already had the book out and was working on it. Then she had the nerve to say "If u"all ever need anything be sure to call"...I don't think so. I have to switch nephs but that is the least of my worries..they say neph at new clinic is very good and I met the Davita neph 1 time for 2 min so not concerned about that. My first In Clinic is supposed to be Friday so hopefully my paperwork is done by then. Run and pressures went very well today and did not have to worry about LOW BP :rofl; :rofl;
NxStage said "they cannot drop you as a patient" which is interesting news since we all know Davita has done that before. I hope all of you had a great Fall day, definately not like this.
Ann
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Ann, your cool is really admirable. I think I'd be in jail, up on murder charges or assault at a minimum. Good decision to switch and let's all hope it's smooth sailing from now on. :flower;
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Thanks Monrein....actually nurse was supposed to come out and program new cycler but I called and said do NOT bring Dir from Hell..so I guess both decided not to come...shoot...I had told my granddaughter to run away when I started with my bat so she would not be involved...I'm ok with prison at this point just so other people don't have to go through this with Davita or Dir from H and thanks but my cool has reached its breaking point I do believe. :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; I so need a drink. My new goal in life is to help the Dir from H lose her job, then she can't pay for her 40 foot sailboat she bought in August and had it moved here from the Great Lakes area. Yup, that is my goal.
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:rofl; :rofl; :rofl; Go for the "goal" girl. And good luck with it.
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:2thumbsup;
You go, girl!
I think they get so used to seeing us in chairs that they forget we can stand up for ourselves!
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I think they get so used to seeing us in chairs that they forget we can stand up for ourselves!
What a great line jbeany. I may need to use that some time. :thumbup;
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today, first day on new cycler....2 min into treatment got a red 60...and pink tinge in wasteline so stopped treatment...initially had trouble sticking arterial..I'm dehydrated so will not try again today, but have to tomorrow....I will get a gallon of wine and get hydrated. yahooooo.
Ann
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Red wine.. red tinge..? Coincidence??
Ha! Just kidding.
I hope tomorrow goes better! :thumbup;
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yes, there are so many co ink i dinks in life aren't there? I went to the competitor, great place, patients looked happy, fantastic home hemo nurse, does real training. We sat for a few min while she was training another couple...we will need to come back to training for a few days but I welcome that as she makes you do hands on training with colored dye running through the machine so you can see everything...new experience for us..we found this place by going into nxstage and looking under centers on their site. yeah nxstage. :cheer:
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Good run today finally... Talked to the competitor nurse today at RAI which is where I am switching to...she is hot that they already have me using a 15 ga needle and 500 speed on my new fistula..this gal worked at Wake Forest in dialysis for several years so will be interesting..she drives in a ways from Charlotte every day...Davita also told me they can't give me my KT/V numbers because I have missed a day a week through no fault of my own and she said that is so not true..interesting...anyhow she thinks she can start with me on Oct 7 if all the paperwork is done..she faxed request to Davita yesterday morning..nothing yet..so I called them this afternoon and supposedly secretary is in another office today..I adv not my problem, how long does it take this request to be done?....the Dir from H had answered the phone herself and was so friendly until I said RAI faxed and I could feel the ice on the lines..so I again asked how long and she said "Well it's just a fax" and I said it needs to be done, thank you and disconnected. If nothing by Friday I have clinic and will speak with the nephrologist..I believe they are both in the same group. Lord I don't want to go to clinic there.... :Kit n Stik;
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happy to hear about the good run. As far as the rest of it goes, what ever happened to the grrrrrrr emoticon?
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happy to hear about the good run. As far as the rest of it goes, what ever happened to the grrrrrrr emoticon?
Will this do
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oh that's good...can we have it added to the emoticons????
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Had my first clinic yesterday and Dr said I can cut back to 5 days a week dialysis..said I'm his first dialyzer this new with in home that he has allowed this..siad my kt/v is 2.11..so I was pleased with that at least. He also gave me some more sticking hints..he used to be a middle school, then hs teacher, then went on to medical school to be a professor, then decided to go on to be a Dr and now a nephrologist..is very good, not a pill pusher but wants to educate patients. It was a good experience. :cheer:
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5 days will be much nicer. Are you doing the 3-1, 3-1 rotating schedule or a 3-1, 2-1 schedule? I started with the 3-1,3-1, and when I switched to the regular 5 days, I went from doing 20 L every time to 25 L on the days I only do 2 in a row. My numbers are actually better than they were before.
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:cheer: So glad things are going well. :cheer: :flower;
Edited: Fixed smiley error - paris, Moderator
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thanks jb and lola...I asked if I could do 3 on and 1 off but Dr said no for some reason so I'm taking Sunday and Wednesday off and am so looking forward to that and enjoy at as long as I keep doing well. :2thumbsup;
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so happy to hear that it has been a good week :cuddle;
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:)