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    #31
    One out of two ain't bad!

    My rituxan infusion on Monday really helped me bounce! I am bouncing off the walls and handling complex farm tasks that need to be done before the snow flies this weekend.

    I am so lucky that this old body still loves drugs!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

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      #32
      I had another infusion today. They gave me a nurse that I did not care for a couple of months ago because my regular nurse was tied up with another responsibility. Once again, this nurse from today gave me questionable care on a few accounts.

      She took it upon herself to shorten my infusion time by 90 minutes. She argued with me about my trip to the ER a few months ago and implied that it had been unnecessary. She claimed that there were no working thermometers in the infusion center and therefore could not monitor by temperature.

      She argued about why would I need a six hour infusion even though it was the doctors order. I stood my ground politely,and told her I wanted a 5 to 6 our infusion, just like the doctor had ordered. I was polite but firm about that.

      Unfortunately, the infusion was over in four hours. The shorter the infusion, the more likely the patient is to have side effects. After she remove the needle, I asked her why the infusion was only four hours. She said she set the machine for five hours and that for some reason the machine came to the liquid in me at a higher rate and resulted in a four hour infusion.she either lied to me, or there is something wrong with the machine.

      Needless to say, I felt frustrated and a bit emotional. As a patient, I already feel a bit vulnerable, especially when somebody is sticking a needle in me.

      I decided that I was going to assert myself so that I would not have to be her patient again. I waited an extra 25 minutes and spoke with the managing nurse. I told him what had occurred in clear and unemotional terms. I asked him about the lack of thermometers. He responded that of course they have thermometers, this is a medical clinic . He could not account for why if the nurse set the machine to five hours it only infused for four hours, the speeding up the delivery of the fluid. In any case, I requested that he not ever assign me to the nurse again if my regular nurse was unavailable to me. He seemed OK with that.

      I hate to be a patient that complains or causes problems for anyone. However, I felt I needed to do something in order to avoid getting that nurse again. On the plus side, I am now two hours after the infusion and I have had no side effects. Luckily.

      It left me wondering whether anyone else here has had difficulty with a provider around there and missed care or any medical care.
      Last edited by Sunshine; 03-02-2017, 12:47 PM.

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        #33
        Better to complain than to be a doormat. Besides, you don't know if others have complained about her too. You may not be the first.


        Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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          #34
          Sounds as if you voiced your complaint in a reasonable way and made a reasonable request.

          She might have been a pinch-hitter, or someone new on the job, or someone whose incompetence hasn't yet been discovered. Or maybe she was just having an off day--at your expense.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

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            #35
            Two off days.
            ANN
            There comes a time when silence is betrayal.- MLK

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              #36
              Originally posted by stillstANNding View Post
              Two off days.
              ANN
              Good catch. She def is not new. Has been there the whole time I have gone there which is since about June 2016.

              It's odd she is warm and friendly to other patients and aloof, dismissive and argumentative with me, I usually have good cordial relationships with medical staff. I have my theory...

              Comment


                #37
                I did my infusion at a local cancer center....

                [QUOTE=BBS1951;62883]I had another infusion today. They gave me a nurse that I did not care for a couple of months ago because my regular nurse was tied up uwith another responsibility. Once again, this nurse from today gave me questionable care on a few accounts.

                She took it upon herself to shorten my infusion time by 90 minutes. She argued with me about my trip to the ER a few months ago and implied that it had been unnecessary. She claimed that there were no working thermometers in the infusion center and therefore could not monitor by temperature.

                She argued about why would I need a six hour infusion even though it was the doctors order. I stood my ground politely,and told her I wanted a 5 to 6 our infusion, just like the doctor had ordered. I was polite but firm about that.

                Unfortunately, the infusion was over in four hours. The shorter the infusion, the more likely the patient is to have side effects. After she remove the needle, I asked her why the infusion was only four hours. She said she set the machine for five hours and that for some reason the machine came to the liquid in me at a higher rate and resulted in a four hour infusion.she either lied to me, or there is something wrong with the machine.

                Needless to say, I felt frustrated and a bit emotional. As a patient, I already feel a bit vulnerable, especially when somebody is sticking a needle in me.

                I decided that I was going to assert myself so that I would not have to be her patient again. I waited an extra 25 minutes and spoke with the managing nurse. I told him what had occurred in clear and unemotional terms. I asked him about the lack of thermometers. He responded that of course they have thermometers, this is a medical clinic . He could not account for why if the nurse set the machine to five hours it only infused for four hours, the speeding up the delivery of the fluid. In any case, I requested that he not ever assign me to the nurse again if my regular nurse was unavailable to me. He seemed OK with that.

                I hate to be a patient that complains or causes problems for anyone. However, I felt I needed to do something in order to avoid getting that nurse again. On the plus side, I am now two hours after the infusion and I have had no side effects. Luckily.
                ~~~~~~~~~<<<~~~~~~
                BBS1951
                I never had a situation like yours. I did 70 grams each time and it took 7 hours.
                I think your doctor should be your advocate....ask her to get in touch with the infusion center. That said, I did increase the rate of the infusion as I had no bad reactions. Remember I did this every other week for 8 years.

                Best of luck.
                Linda
                Last edited by Lazarus; 03-02-2017, 02:42 PM.
                Linda~~~~

                Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                Comment


                  #38
                  BBS, sounds like you handled a not so pleasant situation in the best way possible. However, I agree that I don't think it would be out of line at all to bring it up to your Doctor when you have another appointment.
                  Virginia

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                    #39
                    She sounds like a flat out liar, and a know it all to me.
                    "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                    Albert Einstein

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                      #40
                      I'd be interested in knowing your theory, BBS.
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                      Comment


                        #41
                        The infusion rate MUST be typed into the machine by the nurse, BBS!

                        Depending on the machine, if they've typed in a shorter time, which often happens so they can check vitals partway through when it beeps or check for a reaction, I know some machines will go to the piggy back line rate when the first time logged in ends. The piggy back line rate is a secondary rate set earlier for another bag of fluids that can automatically take over once the first time period ends.

                        If that's the kind of machine used, the nurses are supposed to clear all prior settings before inputting yours to prevent this from happening.

                        If that's not the kind of machine used, the nurse programs in all infusion rates and should be writing them on your chart. I think they start with a low one initially to check for reaction for the first 15 minutes or so, then reset it to your standard rate for the remainder of the infusion. Sometimes, if a different lot is used of IG if you are needing more than one bottle, they have to start the next bottle at a lower rate again to ensure no reaction before ramping that one up to your usual rate. Your upper most acceptable rate should be clearly marked on your chart.

                        Either way, it's human error. Lying about it is simply unacceptable. It can be a good habit to get into to know your infusion rate, and check the machine every time the nurse programs it.

                        And you're right, considering that the nurses are the ones with the sharp needles, it's best to avoid one who you've called out or isn't treating you with respect. I'm glad you spoke up.

                        I'm sorry you had a bad experience, but glad you didn't have a reaction! Hope it helps you!
                        Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

                        Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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                          #42
                          Thank Suzy. Will study this later after work.
                          Attached Files

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                            #43
                            Well, as it turned out, I felt punk and couldn't get off the couch the rest of the day after this infusion. Better today.

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                              #44
                              BBS, glad you are feeling better today. You have had "not so well" days right after infusion before I believe. Don't know if this has anything to do with the timing of the drip. Maybe by tomorrow you will be back to yourself.
                              Virginia

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                                #45
                                Back to myself this morning. The other not so well days were also days they pushed it too fast.

                                I will not let that happen again. I am armed with Suzys knowledge of how the machine works.

                                At the end of the day, I am at the mercy of the nurses. But I will speak up each time for sure.

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