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Puerto Rico Medtronic Factory & Pump Surgery Canceled: sad and scared

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    Puerto Rico Medtronic Factory & Pump Surgery Canceled: sad and scared

    Hi all, itís Maggie.

    On Monday October 9 the office assistant from my neurosurgeon called and said that they needed to cancel my Baclofen pump surgery because the hospital doesnít have any more pumps. She said the only factory that makes the pumps is in Puerto Rico and until Puerto Rico has power, and the factory can get up and running, and the pumps are manufactured and shipped from there to here, my surgery is on hold indefinitely.

    I could barely absorb what she was telling me. I still canít wrap my mind around it.

    It was just this past Thursday October 5 that I was able to get my pump surgery scheduled for Wednesday Nov. 1. I was so excited and so happy. Even though Iím in the worst pain Iíve ever experienced in my life, I could tell myself 26 more days until the surgery, 25, 24, etc., every time I felt like I couldnít bear it any longer, and every time I felt sick and sad about how much I can no longer do because of the severity of the pain: shower regularly, have a give and take conversation longer than a half an hour, make a grocery list (because that involves standing up and crouching down to see what we have and then thinking clearly enough to grasp what weíll need and want to get through the next week).

    The spasticity is so severe that I can no longer stay upright for more than a minute or so and my walk has turned into a halting shuffle. Basically, if I double over while shuffling quickly I can still change my catís litter and refill her food and water; or I can brush my teeth and wash my face and comb my hair; or I can make myself a dinner of canned chili heated up in the microwave and a turkey and cheese sandwich and carry it to bed.

    In the month before my pump trial, Iíd already had to give up driving, grocery shopping, running errands, socializing outside my home. Now Iíve given up any real housekeeping, any personal hygiene beyond basic, almost all socializing in my home. Agh. Itís making me so depressed to count all the other ways my life has become so small that I need to stop.

    Itís also making me feel like such a terrible failure.

    And I feel so selfish because Iíd read articles about how the people of Puerto Rico were suffering, and although I felt so much sympathy for them, it never occurred to me that it would affect me personally. And I feel so guilty because now I want so much for them to get power so I can get my pump so I can be out of this pain.

    So I feel like a failure because Iím just watching myself lose what activities of daily living I had left, and what quality of life I had left, and I donít know what to do to stop it. I just canít manage the pain enough to get back what I had. The only way out that I knew of or know of was the pump.

    And I feel like a bad person because all of a sudden Iím monitoring conditions in Puerto Rico because I need the Medtronic factory to function so that University of Michigan hospital can be sent a pump so I can get my surgery not too much later than Wednesday November 1 because I feel like I can no longer bear the severity of my pain and the damage itís doing to my life and to my sense of self -- and along with that, I can no longer take care of my sweet daughter the way she deserves, or be an equal partner to my sweet husband in any way.

    And there are countless people in Puerto Rico with families who are suffering so much more than I am, but I canít help but think: please oh please make my pump.

    Is there anyone else here on the Board who is waiting for a pump because of the Medtronic factory shutdown in Puerto Rico? If so, will you tell me how youíre coping with it, because I am obviously not doing well?

    And I would be so grateful to hear from other pumpsters or pumpsters-in-waiting or anyone else who could give me advice or support. I feel so alone Ė almost like Iím crazy. Itís been 5 days since I found out that my surgery was canceled and I havenít been able to bring myself to tell my family or my friends because I feel like Iíve become such a burden and am only ever giving them bad news, but I have to start to tell. Please help if you can.

    Maggie

    #2
    Hi Maggie.

    I am sorry to hear that you are in so much pain. Give yourself a break .
    I know that when I am in pain I am a ***** on wheels! The best thing that anybody can do is to leave me the hell alone until I call for you, then jump to do whatever I ask - and do it correctly (my way) too!

    Socialize? Not even! Like you, my mind is so occupied with the pain that there is no 'distracting' me by talking about other things - why can't these people see that I don't care about whatever they want to tell me about?!?
    Things like bathing and cleaning house are not important at those times. And even eating takes on less importance.

    Yeah, I understand that when one is in pain that they can feel like (and may be be) useless to everyone else. A failure. But just the fact that you are sad about about your 'shortcomings' means that it isn't really you but the pain that is causing it.

    Your loved ones see this and understand. But they may be wondering what is on going with you this past week thinking that everything is still "good" (ie the surgery still scheduled and relief just a couple of weeks away). Don't you think that they deserve to know and share the news that you are in a tailspin because of this bad news?

    No it isn't horrible that you are now monitoring events in Puerto Rico to see when relief is going to come to you. You said that you had felt bad about the conditions there prior to learning about the factory that makes the pump being shut down - it is just that now it is of more relevance to you.

    I am not a "pumpster" although I do take baclofen (oral). My only personal knowledge of Metronic is from a diabetic pump that my husband used several years. BUT I do know that Metronic is a HUGE company. Surely they have more than one factory that can make these pumps? Maybe they will modify another factory to help fill the backlog?

    But in any event there is nothing that you can do about any of this except how you react to it. Know that you are not a bad person, just a person in extreme pain that cannot be helped at this time. Accept that there are things that are impossible for you to do - BUT you are not what you can do!
    Let your family help share the burden.

    You are be in my prayers .

    Comment


      #3
      Oh Maggie - I'm so sorry to hear this. It must be a major blow to you! I am not a "pumpster", but maybe someone else who is can come along to offer advise and how they cope.

      I'm surprised that Puerto Rico is the only manufacturing plant - surely there are others in the USA to pick up production? If not, let's hope they can get things up and running smoothly and quickly with aid and $ pouring in.

      Most importantly, please don't think of yourself as a failure! You have done nothing wrong! I agree with msgijo in that your family will pitch in to help while you go through the waiting process.

      I wish there was more I could say to ease your burden. Just know that if I could, I'd be there to give you gentle hugs. We are your MS family, so keep us up to date on the news, take care as we care about you.
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        thank you -- crying and in pain right now

        I finally told my parents and my best friend today.

        My mother said every time I call her blood pressure spikes because I have more bad news, and she hung up on me.

        But my best friend was loving and compassionate and understanding, as was my Dad.

        But I've been crying ever since talking to my Mom and my pain is at it's worst and I am in bed and my sweet husband is making me dinner.

        Seasha and msgijo, thank you so much for your supportive replies.

        Maggie

        Comment


          #5
          Maggie - I'm so sad about your mother's response - I don't know what to say. I;m sure it crushed you. But I'm happy that your dad and best friend were understanding. And your sweet husband sounds like a keeper!

          I'm wondering what's happening to you? Have you been in touch with your neurosurgeon lately to see if there is a plan B? I hope something can be done for you and countless others who are waiting.

          Sending good thoughts and ((hugs)) your way~~
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Wow this is so very weird!! I am going to U of M to get my Baclofen pump. They cancel

            I too go to U of Michigan for the Baclofen pump insert. They called me last week the day before my pre op. appt. and canx my surgery for Oct. 30th. I totally understand how you were/are feeling. At least you got a date for insertion of the pump. Iím hoping to get the same call soon. I mean real soon. I am very happy for you to have a date. Best of wishes for you!!

            Comment


              #7
              Hi Maggie and Memarc

              I am sorry to hear what you are going through. I hope things get worked out soon. I did reach out to my Medtronic rep today about this issue. Here is her reply:
              " Medtronic has started an allocation for new implants for districts across the US. I would suggest that the patient contact the implanting doc to check again with their Medtronic rep regarding the supply issue"

              Take Care, Bob

              Comment


                #8
                Hi Maggie,

                How much baclofen are you taking? Is there a possibility of ramping up the oral if you're not at full dose (80 mg per day.)

                I'm a dumpster, and I had a baclofen pump issue one time when my catheter came out, and they treated me with oral baclofen and ativan to keep the spasms manageable. Could the doctor add a benzo or muscle relaxer to help you wait out the time till the surgery.

                Also sometimes they combine Zanaflex with Baclofen...ask your doc if there is some way he can
                help you deal with the pain till your pump surgery is rescheduled. Sorry it was cancelled, but
                totally understand the reason. I did not know that Medtronics manufacture in PR. I wonder if it's
                just the baclofen pump, or any of their other equipment too...pacemakers, pain pumps, insulin pumps, etc. There were probably a lot of cancelled surgeries across the world.

                Comment


                  #9
                  thank you so much for your responses -- still need help

                  Hi all, it's Maggie.

                  Thank you so much for your responses to my thread about my pump surgery being canceled.

                  Bob, it was so kind of you to call your Medtronic rep. to look into the situation -- thank you!

                  And memarc1120, I hope you were able to have your surgery rescheduled at UofM and that it went well.

                  I had mine on Nov. 22 -- and I wish I could say that things were better, but the pump hasn't worked yet to relieve my pain, and I am not handling it well. I'm still sad and scared, and I don't know why this is happening or how to fix it.

                  I started another thread last night to explain the problem and I am hoping some of you who responded here will be able to give me some advice there.

                  In the meantime, rdmc, I read your recommendations for what might relieve my pain while I was waiting for surgery and now that I am post-surgery, but still at the same level of pain, I am going to ask my PCP about a prescription for Zanaflex and one of the benzodiazapenes to give me some relief while I try to figure out what to do about my pump. Thank you so much.

                  Maggie

                  Comment

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