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  • after dialyzing

    I know my husband feels like his entire body is buzzing after diaylsis ... and quite often legs are cramping. He also complains of his feet and hands feeling like they are on fire.
    We believe that thay keep putting the flow rate to high. we have had one tech get it right .. and as long as we he has had her ... he has had a good treatment. But they can't seem to share the information with each other .. so if that tech is not there ... it's back to having the bad treatments.

  • #2
    Re: after dialyzing

    Originally posted by mab View Post
    I know my husband feels like his entire body is buzzing after diaylsis ... and quite often legs are cramping. He also complains of his feet and hands feeling like they are on fire.
    We believe that thay keep putting the flow rate to high. we have had one tech get it right .. and as long as we he has had her ... he has had a good treatment. But they can't seem to share the information with each other .. so if that tech is not there ... it's back to having the bad treatments.
    mab,

    You are correct. You are more than likely running at too high of a blood flow as most people in center are doing. This not only puts stress on your body, but your fistula and heart as well.
    What blood flow are you running at and how long are your treatments? I would ask whoever your nurse is to turn down the blood flow. If you tell them them that you get sick due to the high blood flow, they must listen to you. I would also speak with your nephrologist and tell you that you wish to run at a lower blood flow rate.
    The reason they run at such high blood flow rates in center is that they must turn your seat over for the next patient and can only run you for 3 or 4 hours. In order to meet CMS requirements to meet the Kt/v levels, they run you at the high flow. If the staff do not want to listen, then you should demand it and speak to your nephrologst and let him know that it is your right.
    Not only do they run blood flow rates too high, but they pull too muchf luid off too fast. If they are pulling more than 400cc's or .4 liters ( giver or take a few hundred as each individual is different) then they are again straining your body, fistula and heart. The bloodstream can only hold a certain amount of fluid and it takes time for the body to transfer the fluid from your tissues - cells - bloodstream. To by pulling more than the given mentioned is just straining and causing more harm than good. Your nephrologst should know this, but more than likely will not tell you unless you ask. Because they must meet certain CMS guidelines, they will rarely do whats best for the patient, but rather what they as a clinic must meet set forth by CMS.
    Stand up for your rights..... Demand longer, slower dialysis... And if you are able too and have a partner, ask about home dialysis......

    ///M3Riddler
    ______________________________
    PD - 13 Years
    3 Transplants
    In-Center Hemo - 6 Months
    NxStage - Since April - 06
    Facebook: Dialysis Discussion Uncensored

    ________________________________

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    • #3
      Re: after dialyzing

      We are hoping to get my husband on home diaylsis in the next couple of months...if we can just make it till then. He has complained a number of times to the nurses/techs/rn and even the doctor... and all we get from them is "I don't know ...haven't heard of that before".

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      • #4
        Re: after dialyzing

        Hey MAB,

        You probably have all this down pat, but here is a link to discussions about dry weight. Maybe you'll find something that may help out.

        http://forums.homedialysis.org/threa...-dry-weight-is

        It's home dialysis discussion but who would know better than those who have learned it through first hand, personal experience!

        Good luck and let us know how things are going. Sure wish our healthcare providers would listen to us more, it is our body after all!!!!
        Create signature while not logged in, edited through forums.davita.com on 08/15/2012 @ 12:53!!!!!

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        • #5
          Re: after dialyzing

          My husband usually has to help the techs figure his dry weight.
          Here is an examply of his diaylsis ... he made them take him off diaylsis ONE HOUR early ... and he still came out UNDER his dry weight. Something is seriously wrong here ... and really think about calling davita's 1-800 number to complain and report it.

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          • #6
            Re: after dialyzing

            The best thing you/ your husband can do is be an advocate for him/himself. Believe me, I'm in the middle of a battle w/my nurse and tech. I had a 3 hour discussion/ look at my records with my director. I won't get into all the details, but let me share what I learned
            1) the doctor and the nurse make the notes, (not the tech!) and you would be surprised how little they note, if anything! If nothing is noted, it [B]Did not[B] happen. Even if you know that it did and can get someone else to recall it, it did not happen. Period.
            2)the nurse and the tech rarely talk, and if they do, it is rarely written down.
            3)Staff can, and will lie to your face. Mine just did a minute ago, esp if they need to cover their own behind.
            From now on, I am going to insist that important conversations, such as how you feel, blood flow rates, dry weight etc is documented. I believe I may even make them show me. I'm also going to make sure that the doctor puts orders in writing in my chart (needle size/type, blood flow, dry weight etc) and make sure they are followed! You can always ask questions. I am also going to be documenting any/every conversation that is important. I am also going to tell them over and over until they listen. You can insists that certain tech(s) don't touch you, esp if they won't listen; you may wait longer, but I think it's worth the wait to feel human.
            Oh, and yes, I had great staff when I started, but of course the nurse left (better hours and pay) and the tech left (pretty sure she saw this place going to hell).
            Now for the disclaimers:
            I'm really not an angry, unhappy person, but I found these out the hard way and would like to save someone else the hassle.
            I also realize that all clinics can't be as dysfunctional as mine (hopefully) so all of the above may not apply.
            Oh and most likely I will be changing clinics and probably be leaving Davita all together. I would have done it already, but we are purchasing a house and I want to be pretty sure before I go thru the hassle so I only do it once. Plus the time and mileage will be pretty draining.
            Thank you for letting me vent and I hope this helps you two feel better and able to enjoy life more.
            I would report to Davita too.

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            • #7
              Re: after dialyzing

              Husband is on blood thinners ... so they test his bllod weekly ... yesterday they called from the coumdin clinic saying that his leverls were all over the place the last couple of weeks. He asked if is could be from something he ate ... and they said "No ,,, I looks like you are dehydrated" !!!!
              So he told them at Davita ... "I told you that you were taking off too much fluid !!!!"

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              • #8
                Re: after dialyzing

                :We passed the "inspection" for the Home daiylsis. Had a great talk with our PD nurse.
                Now we are just waiting for the surby for the port.
                Last friday as we were pulling out of the restaurant ... who comes walking out ... his kidney doctor. My hisband wanted to not talk "shop: but since I had not had a chance to meet his doctor before, we got to talking... and I laid it out for her. I came staright out and told her that "she doesn't see him when he gets home. That the only way he can begin to funciton tis to take his pain pill and his "happy pill". But that does not take care of his cramping and buzzing feeling" It must have hit home a little bit ... because the next thing we know they have shortened his diaylsis time. They still took him below his dry weight ... and this we find is what causes a lot of his problems.
                I am pretty sure that our PD nurse will going to bat for him. We had told her about his ankle ... he broke it many years ago ... has screws in it ... and ever since then it has been puffy. Davita insists that it is fluid and keeps trying to suck the fluid off PD nurse looked at it and said defintely it was not fluid !!! so hopefully things will get better while we are waiting to get on PD.

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                • #9
                  Re: after dialyzing

                  Mab, if he is cramping and feeling like you say, he needs to increase his dry weight and the cycler needs to be set not to pull too much fluid off. This is something that you have the right to tell whoever is working and they must comply. You do not need the doctor to tell them to lower the blood flow or lower the amount of fluid being taken off. This is something that you are able to control and speak up about. The bloodstream can only hold approx.. .4 or 400cc's give or take per individual. If they are pulling more than this off per hour, then they are straining not only your veins, but your heart as well. This can also be causing the cramping as it is trying to pull from the tissues and causing the cramping. The fluid must travel from tissues-cells to your bloodstream and this takes time. so no matter how high they jack up the blood flow, its still only going to pull whatever is in the bloodstream and nothing more. One indicator you can use to gell if they are pulling too much fluid off besides weighing yourself is your pulse and blood pressure. If you see your blood pressure starting to drop or you see your pulse starting to rise above 90, then you may be reaching your dry weight and they need to either slow down or stop the fluid removal. If the pulse starts to drop, then they can always turn the fluid removal back on. The nurses are not in charge, but rather you are and have the right to tell them to stop removing fluid or remove it at a lower rate. Many centers like to removing as much as possible sometimes over 3 or 4 liters per 3 or 4 hour treatment. This is just entireely too much as it will make you sick and per your description. You must advocate and speak up for yourself not wait sometimes up to a month before you see your doctor to tell you something that you should be in control of. It is important for the patient to be involved as muich as you can with your treatments... An informed patient is a happy patient..

                  ///M3R
                  ______________________________
                  PD - 13 Years
                  3 Transplants
                  In-Center Hemo - 6 Months
                  NxStage - Since April - 06
                  Facebook: Dialysis Discussion Uncensored

                  ________________________________

                  Comment


                  • #10
                    Re: after dialyzing

                    I too, have a problem with the DaVita location I use. We have additional problems than what you mentioned. I am in the process of collecting all that I have logged for myself in order to send a complaint with someone else I know, so that hopefully something will be done at several locations here. I am so fed up with what I have to deal with every time I go to dilaysis and my desire is to do PD @nite while I sleep.I get to the place I do not want to go to dialysis because of the situation there. I came home from dialysis nearly in tears last week...that is not good.
                    So I want to encourage any one that has any kind of problem with DaVita in general(staff or whatever) keep a log of some kind of what is or is not going on, and take it to the office mgr if possible. There should be a poster in the unit with a 1-880 number to complain if you do not feel you can talk to anyone there. You could complain to the state also, and theyy will investigate. Maybe that is what needs ot be done with DaVita....Do they KNOW what is going on in their units???

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                    • #11
                      Re: after dialyzing

                      My husband skipped his treatment on Friday ... because he wanted a weekend with out feeling sick from diaylsis. He went in today ... after skipping Friday ... 2 kilos UNDER his dry weight. Of course ... the techs started saying ... ohh ... we need to lower your dry weight. They were supposed to only clean his blood ... and not pull any fluid off. He still ended up less than he went in as ... and feeling bad again. Fortunetly .. we have a very good RN. He had a long talk with her today ... and she did let him know that she has had a long talk with the Dr. Hopefully they can get this figured out ... OR get him on PD as fast as possible.

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                      • #12
                        Re: after dialyzing

                        Originally posted by mab View Post
                        My husband skipped his treatment on Friday ... because he wanted a weekend with out feeling sick from diaylsis. He went in today ... after skipping Friday ... 2 kilos UNDER his dry weight. Of course ... the techs started saying ... ohh ... we need to lower your dry weight. They were supposed to only clean his blood ... and not pull any fluid off. He still ended up less than he went in as ... and feeling bad again. Fortunetly .. we have a very good RN. He had a long talk with her today ... and she did let him know that she has had a long talk with the Dr. Hopefully they can get this figured out ... OR get him on PD as fast as possible.
                        mab, i hope all is well with you and your husband. After reading your post about your husband skipping a treatment, first, how long has he been on dialysis, may I ask? As I do believe that, once you have adjusted to dialysis, you will come accustom to what your dry weight should be. When you leave dialyzes each day, and check your dry weight, and whatever you eat or drink (consume in your diet), you should monitor whatever, especially all foods that are liquid at room temperature, because there are some foods that he may consume, that should be included as fluids. If you come in under your dry weight, and you have skipped that Friday before the weekend, then he must have not eaten or drink very much over the weekend, and if he had knowledge of that, he could possibly become keen as to how much kg to take off, because believe it or not, and I am here to tell you by experience, sometime the nurse or tech don"t quite know how much to take off, they would probably go by his last full hemo run. If you are below your dry weight, it could be even a case of him losing some of his muscle weight (dry weight) over that weekend, and most of the time when there is too much fluid being taken off, it could cause cramping, which means they are going into your muscle weight, which is not fluid weight, and believe me, you will feel it and know it as well. I hope this helps. And if he is seriously thinking about PD, in my opinion, PD is so much less taxing on the body than hemo, and yes, i have experienced this, from many years of hemo dialysis history. Though I never dreamed possible, that I would end up back on hemo, but of course, developing an umblical hernia, sent me back to hemo temporarily last year for six months, and that is another story for another time, which I would be happy to share with you. Hit me up on private message on davita, anytime. I hope to hear from you real soon.
                        take care and all the best to you and your husband.
                        Glo

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                        • #13
                          I found a good site that answered all my questions.

                          http://gil1.home.pipeline.com/esrd/

                          read about gils battle with pkd

                          dicknh

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                          • #14
                            After spending forty years off and on dialysis (transplants in between) I can tell you that there are many odd feelings someone can get and it depends upon many things...how much fluid is being removed, what the labs are like (if potassium is too high when starting a treatment), blood flow rate, even having a cold..lots of things.
                            But I was a bit disturbed when I read 'one tech gets it right.' EXCUSE ME....YOU are in control of your treatments...the techs and nurses are there to help YOU. If you feel your blood flow pump needs to come down and your URR is at a good level (need to ask the nurse to go over your lab values) then you can TELL them to turn the stinkin' thing down! It is your body and making wise choices is up to you! That is the freedom I feel even being tethered to a machine for a few hours three times a week. It is up to you to keep track of your labs, your fluids, your diet, your meds...then you have the tools you need to make wise decisions on your part! Some days, I know my labs and all the rest are good, I will skim 15 minuties off my treatment...I am made to sign a 'against medical blah blah' paper but that's cool..no problem. Some days I feel I need a longer treatment and ask for an additional 15 minutes..if I am not taking anyone's chair time away, it is given to me. This is not an exact science! Best of luck!

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                            • #15
                              Hey there! You are not alone in this. There are a couple ways to resolve this. One is to go through the channels at the unit and the other is to contact your local ESRD Network and they will take the complaint and work on it for you. Oftentimes, the Network is better because they have a great deal of clout in this matter. Find your network at http://www.esrdnetworks.org/esrd-net.../esrd-networks then call and make a complaint. Also, join your local network so you can work to help others. If you're having problems, others are too!

                              I know what it's like to be in your situation. I'm sorry you have to go through this. It's very difficult. But help is on the way, I'm sure.

                              Best of luck.
                              Fistula - March 2008
                              Began Dialysis - August 2008
                              Fistula Revision - Feb 2011

                              Dialysis Patient Citizens, Patient Ambassador
                              NW14 ESRD Network, Patient Advisory Committee Member
                              CDC Infections Control Discussion Panel Member
                              National Kidney Foundation Peer-to-Peer Mentor

                              Blog: www.DevonTexas.com

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