I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: lola on December 22, 2009, 06:23:29 AM
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Otto is on the verge of telling Davita to take there machine and put it where the sun don't shine. I am a basket case, I need to know if anyone does home-hemo 4 or 3 days. Otto has been doing 4 days (on his own) for months and his labs look good and the test they do to see if you are getting good Dialysis looks perfect. Yesturday the nurse called and laid into him about skipping and blah, blah, blah, well Otto as many of you remember is only doing this for the kids and I as he is fine with going to heaven but realizes we still need him here. They pissed him off so bad he ended up not doing it yesterday and now is talking about just stopping. They also said the Dr is the only one who can change to 4 days, I'm going with him to his appt tomorrow to be his voice as Otto NEEDS a break, I don't see why they can't just let him do 4 days if his labs look good and he feels good. It is very easy for them to tell him what he HAS to do when they have no clue what it is like to stay alive because of a machine. I am also going to voice my concern over the lack of care I feel Otto receives by the staff, they call EVERY week about his flow sheets and not receiving them when I watch him send them after EVERY session, it's not his fault they can't seem to keep track of them, and then he is accused of skipping a whole week and that is something he has NEVER done. I also have concerns over the fact that his BP can be 190/130 and they never call to see if that is an error or maybe he needs to have his meds changed. GRRRRRRRRRRRRRRRR HELP!!!!!!!
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:grouphug;
I hope with you there to be a voice for Otto, the visit will go better. Frustration can really take its toll. I think you should tell them exactly what you posted here. Especially that their attitude is pushing Otto to simply cash it in. That would be a terrible thing for them to have to deal with (not to mention what it would do to you!)
Copy all of the information to his neph, too. Try to get him (or her) involved.
My thoughts are with you.
Aleta
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:pray; that all goes well, for you two, at the meeting. Don't let them get you too upset to upset to fully explain your case.
:grouphug;
I hope with you there to be a voice for Otto, the visit will go better. Frustration can really take its toll. I think you should tell them exactly what you posted here. Especially that their attitude is pushing Otto to simply cash it in. That would be a terrible thing for them to have to deal with (not to mention what it would do to you!)
Copy all of the information to his neph, too. Try to get him (or her) involved.
My thoughts are with you.
Aleta
Excellent advise advise! I can't improve on it.
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I take home hemo 6 days a week, and please excuse what i have to say, but because Otto is feeling better and labs look good is because the hemo is doing what it is supposed to do. I understand if you are ready to go that is your decision but if you are not then you should follow your Doctors advice. I know it is hard and a pain trust me. I am a single Mom raising 2 daughters who are still young and I work full time I am tired all the time and I have had numerous infections in my perma cath while waiting for the fistula to mature, but I need to be around for my children this is my decision, if you do not want to anymore than maybe you should sit down and talk openly with your children and let them know that this is what you want and that you are right with it. anyway just my thoughts
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Lola, we're all behind you, lending a supporting hand to swing that big stick!
:Kit n Stik;
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Lola, you have fought so many battles to help Otto. Print out what you posted here and take it with you. Write out anything and then, if you have to, hand the paper to the doctor. I love my neph, but his office staff needs help. So many things have been faxed to them and they say they never got them. It just gets hard to keep fighting some of the same fights over and over again. You are doing an excellent job at being a mom, homemaker, employee, wife and kidney advocate for your husband and daughter. I admire, respect, and love you :cuddle; I am with jbeany - we will swing the big stick whenever you tell us to!!
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Sorry to hear lola, sounds like that doc/center knows petey's/marvin's doc :urcrazy;
I agree with paris and print what you have wrote and use it as a reminder what you need to talk to the doctor about. Don't lt him leave the roo till your finished just because he has another appointment to see. Raise all your concerns and provide names if possible from the people at the center who call.
Good Luck on Wednesday.
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:bandance; :bandance; We are home from our appt and it went VERY well. I was very honest about how upset I am with Otto's care, his BP was 201/109 and after going over flow sheets and seeing this has been gong on for awhile the Dr made some changes. The B@#$% nurse was not in but another nurse did say she had seen a flow sheet with a high BP and said something to the B@#$% and was told she would let the DR know and never did. They were very sorry for the lack of care and the way she calls ALL the time about missing flow sheets and her scolding Otto about skipping. Otto is now on 4 days a week for a month (he has been already doing this) and if things keep going well he can keep it up. I made it very clear that she can not continue to treat Otto like this as he is ready to say go to hell. I'm so glad I went to stick up for him as I could see Otto had a weight lifted off his shoulders. xoxoxox
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Oh, Lola!
I am so glad! :cheer: :cheer:
Sometimes folks just need a caring advocate who will SPEAK UP!
Let's hope the B@st@rd nurse keeps out of the way and lets Otto and yoou manage his care the way it needs to be!
:grouphug;
Right now, doing the happy dance for you. :bandance; :bandance;
Aleta
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This link is for lola and LOLA ONLY if your not lola stir away from this link
http://www.youtube.com/watch?v=hgnHEyeMECc
:bow; Rico
:shy;
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i'm glad everything went well. what i do when i run into pushy, know it all medical personnel like that nurse...... besides reporting them to their superiors is......look right at them and very calmly say "this is my life, you do it my way or you don't do it at all" we have one tech at my center that they won't let go near me because of something he said and did. i'm amazed that he's still working, however as long as he isn't allowed to try and kill me with his inability to function properly i realize i don't have much to say about it. keep up the good work, it's good otto has you to go to bat for him.
hope your family has a wonderful holiday.
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Well done, Lola! :clap;
I hope this makes dialysis much less of a burden for Otto. Good luck to him. :bestwishes;
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This link is for lola and LOLA ONLY if your not lola stir away from this link
http://www.youtube.com/watch?v=hgnHEyeMECc
:bow; Rico
:shy;
:-* :-* :-* :-* :-* xoxoxoxoxo you just made my day, luv you Rico
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Sorry I didn't see this thread before now, Lola. My advice would have been exactly what Aleta said -- and apparently exactly what you did. Glad the appointment went so well. And, Grammalady does what I do -- look them in the eye and say, "No, it's not your life. Marvin and I are intelligent, educated, and experienced (years and years of ESRD and dialysis). We've thought this out, and we KNOW what's best for him and his body. WE ARE GOING TO DO THIS OUR WAY -- you can agree or you can get the hell out of our way." For this, I've been called an aggressive, overbearing, obnoxious, know-it-all bitch. But, guess what? I'm an aggressive, overbearing, obnoxious, know-it-all bitch with a happy, somewhat healthy (all things considered), content (all things considered), well-adjusted, living husband who lives his life on his own terms!
You go, girl! Otto is your #1 concern. Fight for his rights to do this his way and in the way you and he KNOW is best for him! Paris said it is hard to fight the same fights over and over again ... well, the more you fight the same fights, the better you get at fighting them! Pretty soon, the doctors, nurses, etc. will realize that you're not backing down and you do mean business. Fight on, Lola, fight on!!!!
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Glad you made some progress. If she keps it up, have her stop taking care of ottos chart and a do not call from her. If she can't take care of otto, she's not doing her job. Blood Pressure is nothing to take light of.
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Otto is lucky to have you and you can tell him I said that. You did the right thing. Now you need to follow up on their word. Next time she gives you crap you call the doctor.
8)
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Do you fax the stuff that you send to them? If you do, I think there is usually a little thing you can activate that makes it put a dot on your original or print out a receipt to prove you sent it. Just a though. Hope things continue to be good with the results.
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Rerun I don't think there will be ANY more problems (hehehehe >:D) and Otto e-mails his flow sheets, the other nurse told the Dr she HAS seen them the B@#$% just misplaces them. Davita loves us as we are private ins so they can tell our ins company to bend over while they screw them, for Christmas they gave Otto a new bag and it is still sitting on the counter at the clinic ;D. I have decided this last year with everything Otto has been put through due to lack of care that Dr Lola needs to step up and tell people how to do there jobs, and not care if it hurts there feelings.
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:2thumbsup; :yahoo;Glad it turned the way it did for. You keep :boxing; for Otto like that. He is one lucky fellow to have you. :bestwishes;
Rob
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Doctor, nurses, people that piss her off - :Kit n Stik; - Lola :rofl; :rofl; :rofl;
Got getem lola! :2thumbsup;
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I have met Lola in person and Folks lets just say Otto is in good hands, and if anyone gets in the way Lola we will send bail money for you... :rofl;
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Maybe we should start a "bail" fund and I'll just start going to everyone's Dr's appt and kicken some A@$ :rofl; :rofl;
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And it WOULD be worth it at the end of the day! :2thumbsup; :rofl; :rofl; :rofl;
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glad it worked out
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:bandance; :bandance; :bandance; Otto gets to stay on 4 days, labs look GREAT!!! Funny thing is his B/P was 200/110 yet all his flow sheets show since starting another B/P med last month it's been great, they asked if he felt OK and he nope YOU GUYS STRESS me out!!!!!!!!!!! Maybe I'm finally starting to rub off on him. FYI cheesy puffs are VERY bad for you :oops; so Otto is going back to chippies
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:2thumbsup; :2thumbsup; :2thumbsup;
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:bandance; :bandance; :bandance; Otto gets to stay on 4 days, labs look GREAT!!! Funny thing is his B/P was 200/110 yet all his flow sheets show since starting another B/P med last month it's been great, they asked if he felt OK and he nope YOU GUYS STRESS me out!!!!!!!!!!! Maybe I'm finally starting to rub off on him. FYI cheesy puffs are VERY bad for you :oops; so Otto is going back to chippies
He may have extra fluid on. He may want to challenge his dry weight. High BP is a sign of extra fluid.
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rerun, his BP is PERFECT at home, but goes out of control at the clinic when the B@#$% nurse comes in.....The girls just laughed when he pointed out his BP on his daily flow sheets.....
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What great news! So glad four days is working for Otto. Nice to read some good news :2thumbsup;
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I don't know why I haven't looked at this thread before. Lola, your Otto sounds just like my MM, he says he could chuck the whole thing in a heart beat, and I am sick of hearing that. The other day I said Don't you care about me at all? Why do you want to leave me all alone? Guess what? He hasn't said that he was going to quit since then. The little bas$%^&.
I am having trouble with out clinic and the nurses at our Dr as well. I clicked on your name to see if you lived in Houston, TX because I thought you were surely talking about our Dr's office! :banghead; I'm not going to let them run over me anymore. Your post has inspired me! :boxing; They better act right or I'm gonna give it to 'em. Thanks! And I am so glad you took control of your situation there, that is absolutely wonderful!
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Hey Malibu, if you need any hints on :boxing; :boxing; :boxing; let me know. Most Dr's put there heads down when they see me >:D Otto only does this for the kids and I as he knows we still need him. But man once we win the Lottery he's outa here >:D >:D >:D KIDDING!!!!! Today we got an e-mail from one of the NA's asking us to start e-mailing everything to her so she makes sure the DR see's it since the B@#$% again told Otto yesterday he has missing flow sheets....I swear she's the biggest idiot
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Well Otto's been told he needs to go back to 5 days :'( His labs are looking really bad and his Dr basically told Otto he is going to end up 6 feet under. Otto is struggling so bad mentally as needing a machine to stay alive. We all tried to convince him to go in center for 2-3 months for a "break" and he asked to get a "break" altogether :'(. It is so hard to see him go through this, we have tried anti depressants and also to get him to go talk to someone but he's against it all. Otto is also having issues with one of his buttonholes so they want to start a new one but that means going in every day till it is established. This week his arm hurt the entire run so of course he skipped the next day to let it "rest". :Kit n Stik; Our social worker also tried to talk to him about things but she's not the brightest bulb on the tree, as she asked me if I needed help with paper work for medicare B which I reminded her that I can not afford to add anymore for medical but that I found out Otto should get Medical assistance since he is deemed disabled by SS and her response was " oh yeah I guess I didn't even think about that" she then offered to help with the paper work, my response "no thanks I already did your job" :Kit n Stik; grrrrrrrrrrr. I'm EXHAUSTED!!!!! There's my vent :cuddle;
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:grouphug; :grouphug; :grouphug;
Poor Otto. HUGS for you both lola.
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Lola :pray; it gets better for you both. :grouphug;
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Lola it all sounds very overwhelming and I'm hoping you can both get a breather very soon. :cuddle;
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Sorry to hear about Otto Lola. Hope he gets better and comes around to go in center for a bit to get button hole started in a new place.
As for the social worker - :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik;
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What about two days on 1 day off? You end up doing 4 treatments some weeks (one out of every three weeks) and five treatments others (two out of every three).
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Lola your family is in my prayers especially Otto. I can't begin to know what he is feeling but I definitely sense the frustration. Wish there was something more I could do to help.
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I am sorry about Otto's labs and his frustration. It hasn't been easy for him - or you - for quite awhile. Sending love and some hugs. :cuddle; :cuddle;
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What about two days on 1 day off? You end up doing 4 treatments some weeks (one out of every three weeks) and five treatments others (two out of every three).
Otto is on call Saturday's and so Sunday and Monday is his day's off and he REFUSES to do Sunday as that is his only day off from work and D. I'm :pray; that this week he'll do 5 days but I'm sure he'll come up with an excuse of some sort :Kit n Stik;
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Oh Lola...I sure hope things get better quickly for you both. I got a grin out of your rant about the social worker.....we have one of those "not so bright" ones here too. :banghead;
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Hi Lola,
I know your post is old and I believe everything is settled. You have to look at things from both points of view. Not sure, but your clinic may been billling for more treatments than your husband was doing at home. This is why they like to know if you even take one day or switch your days off. They bill for it and you know how that goes.....
Even though his labs are good now, this may affect him long term with the larger molecules.... Remember, kidneys work 24/7. But I do understand the choice he has made and that should be his right.
Im thinking that Davita is more interested in the billing part.
///M3R
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Well Otto is going back to in-center....They want him to go to 6 days and he say's OH H@#$ NO!!!! I think he (we) need a break from Davita or should I say a few staff members. I have such mixed emotions on this not sure what to say.............Otto's phosphorous is 10.9 they were suppose to send him something new to try 3 weeks ago when it was 8.2 but of course we have yet to see it :Kit n Stik;
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Six days?? For how long each day? Oh man, I don't blame him for saying no. How are you doing lola??
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He may feel better going six days a week. It is the up and coming dialysis.
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I think his "run" time is around 2.45, and getting him to do 5 days a week is a joke but now 6. I'm doing ok I think
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so finding a center for Otto is turning into a challenge. Otto needs M W F around 9am due to his work schedule and also the kids, I was told he can be on a waiting list since people do pass away mmmmmmmmmmmmThanks!!!!
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Well we finally got into Otto's old unit, they made some calls and found someone who was willing to switch :bandance; when I called the B@#$% nurse at Dahhvita she was so rude and said she wasn't going to help make the call to the new center and set it up. I informed her that was fine, I had already given her name to the clinic mgr who would call her and let her know she can't act this way....
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Wow, what a rude Bi@tch. Isn't that her job? ???
:Kit n Stik;
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Otto is set to start in-center on Friday, yesterday as he was coming off wall-e his BP crashed I actually thought I was gonna have to call 911. Every day this week an hour or 2 after he's done he has started to feel very light headed and breaks out in a cold sweat. I have watched this get worse the more dialysis he does, when he is on 4 days he feels better then when he is on 5. I have asked if his dry weight is off or if there is something wrong with the unit, but I just keep hearing it's because he's not doing enough dialysis. I really think had he been shown some compassion and had someone listened to him he would not be making the switch. I have no idea what it is like to be a dialysis pt but I try to always show compassion, just wish Otto's unit would have done the same. I am scared to death as we watched Otto "wither" away in-center but pray to God this time is different.. We are going to go back to Fresinius and when he was with them before everyone was always very nice to deal with. Poor little Cierra was in the room yesterday when Otto's BP crashed and for the rest of the day she would not leave Otto's side :angel; Thanks again everyone for all the support :grouphug;
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:grouphug; :grouphug; :grouphug;
Oh lola, thats frightening for all of you. I hope things improve... sending you and Otto and sweet little Cierra :angel; HUGS!
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Lola, I hope the new/old center works out better and Otto show's improvement.
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OMG!!!!!! So today suddenly there all worried there is something going :banghead; told them had they LISTENED when Otto tried to tell them that for the last 2 months he would MAYBE have continued with home-hemo. Now he needs to go see his DR ASAP they are worried something may be going on with his heart. BP is still running low after 4 days now with no meds, although since no dialysis this weekend he had no crashes.
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:boxing; Damn!
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I'm confused about something. They say Otto wasn't doing "enough" dialysis at home when doing 4 days a week. So, how is it "better" for him to be doing 3 days a week in center??? The math doesn't quite add up for me....
Wouldn't 4 days a week be better than 3 days a week, and... why do 5 days a week if it was making him crash?
I'm so confused.... ???
KarenInWA
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Karen in-center is "harder", at home you are able to pull less fluid since you do it more days a week making it easier on your body. They are now wondering if his symptoms are due to something with his heart? I'm praying it's just that they had his over medicated.
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Otto crashed again today :banghead; :banghead; :banghead; went to DR and the ran labs EKG and he has a big word problem with his heart muscle. Dr said the muscle is no longer strong enough to hold a good BP so he's on a med to hopefully help that. Praying we can start in-center Friday that way he always has someone there. Today happened so fast again holding on to him his lines and couldn't reach the phone to call 911 THIS SUCKS!!!!!!
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Oh lola honey, I am so sorry! :grouphug;
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Well this will be my last post in this section as Otto "officially" started in-center today. Otto did GREAT :bandance; :bandance; when his BP started to go down hill they tweaked things and he stayed with them. The staff was so great, VERY friendly what a difference!!!! I stayed with him for about an hour and decided it was time to leave him in there hands, I walked out the door and felt 200lbs lighter!!!!!! Thanks for the support while we did home-hemo....
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I am glad you could let others take care of Otto for a bit. You both gave it a great try. I hope in-center is good for both you and Otto. You are an amazing wife!!
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It's a lot of responsibility if things aren't working on home hemo. I hope he feels better, and I hope you can enjoy the break from the worry for a while.
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I hope it continues to go well!
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That's good lola, I hope it continues to go well.