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    #16
    if I have to call my caregivee I pay her double for her time but I can talk just about anyone thru a change I keep supplies in my van when I travel I keep extra u just never know joys of quad life or sci period

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      #17
      You need to have a few different options in place to help you deal with this in the future. ER's are not equipped to just change catheters -

      1. if Urgent Care is not an option, than you need to have another option in place, such as what was mentioned above.
      2. you need a primary doc for your SCI that, in the case you do need to be admitted, he/she can do so.
      3. keep extra supplies handy.

      ckf
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        #18
        My urological supplies provider asks me whether I have any remaining supplies anytime I call to order, as Medicare doesn't allow sending supplies if I have any.
        Alan

        Proofread carefully to see if you any words out.

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          #19
          Originally posted by alan View Post
          My urological supplies provider asks me whether I have any remaining supplies anytime I call to order, as Medicare doesn't allow sending supplies if I have any.
          And how do you respond?

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            #20
            I tell them I have none.
            Alan

            Proofread carefully to see if you any words out.

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              #21
              My experience with AD and the emergency room is not good. They haven't a clue. My spinal cord surgery and most records are at Ohio State's medical facilities. Several years ago I began a treadmill program for SCIers at OSU. After my first day my right knee swelled up and AD kicked in (I'm a T-5 para). So although OSU ER was not the closest, I thought it would be better there since they had direct access to my records. After the usual 2 hour wait (which by this time my AD had begun to subside), the first doctor I saw actually had to Google "AD"! It was obvious to me that the cause was my knee, but they insisted on doing the whole CBC thing and hook up an IV. I balked at both, saying that I "just wanted to get my knee x-rayed". After 10 minutes of arguing, they finally relented (after I signed paperwork). I finally was put into a room and was about to get my knee x-rayed when a serious accident occurred and the portable X-ray machine and tech had to go back to the ER. Another 2 hours and I finally got it x-rayed: broken knee cap. At least the AD was gone! But lesson learned.

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                #22
                I would urge all people at risk for AD (injuries T7 and above) to carry with them at all times a card which gives directions for AD management and even consider carrying a copy of the Clinical Practice Guideline available for free from the Consortium for Spinal Cord Medicine. There is also a card available from the Christopher & Dana Reeve Paralysis Foundation, and from the SCI Model Systems Knowledge Center. Many large SCI rehab centers also have their own cards which they provide to their clients.

                http://www.pva.org/media/pdf/cpg_aut...ysreflexia.pdf

                https://www.pva.org/CMSPages/GetFile...8-647d0e7fa130

                https://www.christopherreeve.org/liv...s/wallet-cards

                https://msktc.org/sci/factsheets/autonomic_dysreflexia

                Discuss AD with your primary care physician and get a prescription for medication to use if you have AD that cannot be quickly corrected and which you can take while seeking medical diagnosis of the cause and appropriate intervention. Insist that paramedics and emergency room staff look at these materials if they are clueless about AD.

                Find and train someone to change indwelling catheters if you have an emergency. You may have a neighbor who is a nurse who might do this. Even if your regular attendants are not nurses, they can learn to do this procedure in an emergency.

                If you have a bad experience with healthcare professionals in hospitals and emergency departments not listening to you or taking your AD seriously, insist on going up the chain of command. Every hospital has supervising physicians and nurses who can intervene on your behalf. After the episode is resolved and you are back home, contact the hospital's Risk Management office and tell them about your experience. Tell them you that if this occurs again and you suffer ill-effects (such as a stroke or organ bleed) from uncontrolled AD while in their ED or hospital in the future, you or your family will be contacting a malpractice attorney. Tell them that they need to have mandatory training for all ED nurses and physicians (or for the hospitalists physicians or inpatient nurses if that is appropriate) on this to avoid such a suit in the future, from you or others with AD. The existence of the clinical practice guideline from the Consortium, which has been widely distributed to providers throughout the USA and other countries as well, has served as the basis for successful malpractice suits in the past.

                (KLD)
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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