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  • AD in ER

    If I ever wind up in the emergency room because of dysreflexia, it will be because I wasn't able to find a cause for it here (i.e bladder, bowel, skin, toenail, etc.) So, I would likely want them to check for an internal cause via x-rays to start. How would I convince them to do such tests? They haven't been very responsive to requests of mine the times I was there for other things in the past. They treated the symptoms I came for. If the same would apply if I go for AD BP, they'll just treat the BP, which isn't all I need.

    On an unrelated note to the above, I get terrible anxiety in hospitals.
    Alan

    Proofread carefully to see if you any words out.

  • #2
    Originally posted by alan View Post
    If I ever wind up in the emergency room because of dysreflexia, it will be because I wasn't able to find a cause for it here (i.e bladder, bowel, skin, toenail, etc.) So, I would likely want them to check for an internal cause via x-rays to start. How would I convince them to do such tests? They haven't been very responsive to requests of mine the times I was there for other things in the past. They treated the symptoms I came for. If the same would apply if I go for AD BP, they'll just treat the BP, which isn't all I need.

    On an unrelated note to the above, I get terrible anxiety in hospitals.
    Usually an emergency room deals with immediate and dangerous symptoms, not specifically with root causes. So, likely an emergency unit will treat you with nitro paste or other substance to address autonomia. Once you are stabilized and observed for a while, they are ready to discharge you and expect you to follow up with your regular doctors who presumably know you better and will want to start tests to work out what is going on that may cause bouts of unexplained autonomia. Bladder, bowel, skin, toe nails, are probably the triggers for a very high percentage of autonomia episodes.

    Comment


    • #3
      I developed another ileus Sunday night and when I went to the ER the next day (after 12 hours of puking), craziness ensued. Because I was in pain/distress, my BP and HR were all over the place.

      They took a urine sample (from the catheter port). I was unaware but my dad told me later. I have been doing irrigation so this area is not a good clean source of urine.

      I was having tachycardia so they feared that I was going septic and started me on antibiotics. I told them about AD and that it was likely the cause, but they continued.

      The ilues was mild and thankfully did not require an NG Tube. Three days later I think they realized what was going on and visited me in my room. I told them that I had not been experiencing any symptoms of a bladder infection and explained again what was causing the BP and HR irregularly, they took out the IV and sent me home.

      So, alan, to answer your question, unless they are well versed in SCI, expect them to do the wrong thing. I was about to make my own post about my situation but it sorta seemed appropriate here.

      On a side note, what is causing my ileus's? This is the fifth one in 2 1/2 years.

      Comment


      • #4
        Originally posted by Scott C4/5 View Post
        I

        On a side note, what is causing my ileus's? This is the fifth one in 2 1/2 years.
        Have you seen your gastrointestinal doctor about these frequent and late post injury (29 years) ileus events? You'd think with 5 events in 2.5 year, your hospital record would indicated your propensity to this problem.

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        • #5
          Thank you for the replies.

          For how long can Nitropaste be used? Must time be spent without it (a break), or cam it be worn continuosly until the cause is discovered?
          Alan

          Proofread carefully to see if you any words out.

          Comment


          • #6
            This is one of the most comprehensive lists of the causes of Autonomic Dysreflexia that I have seen. Wish we could make the list a Sticky. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC219629/
            Attached Files

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            • #7
              Originally posted by gjnl View Post
              Have you seen your gastrointestinal doctor about these frequent and late post injury (29 years) ileus events? You'd think with 5 events in 2.5 year, your hospital record would indicated your propensity to this problem.
              When I was last there, he didn't seem too worried/interested but I have had 2 ileus's since, so I plan to find out.

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              • #8
                I had a similar experience feb. 11 this year. I had a clog catheter at night and was suffering AD with it. So I went to the ER close to me. And like the past they make me wait two hours to see me. Then once they take me back into the ER they start taking tons of blood. I told them i just need a catheter change and i will be on my way. But they said the doctor needs blood work. So they took blood work and then came back for more fifteen minutes later. Then took me to another room to change catheter. I asked the nurse if i can stay in my chair he said no. And my head was killing me. Then he starts changing the foley and tells me the only foley he has left is a 16fr or 20fr. So I asked him if their was much different in size. He said very little. So I said 20fr.. Which made it worse. Once changed the came in with xray machine for chest xray. Then tells me the doctor order me to stay the night. I told them i eant to leave. They said I need to talk to him. I bitched for the night nd the next day to talk to him and did not get to see him until the next day. So I spent a day and a half in there for no reason. And they had me hooked up to three different biotics. Then on Wednesday I saw him and told him I was leaving and he wanted me to stay. I told him you people here don't know how to tret people in my condition and if i stay you will kill me. When i went in i didn't have a urine infection my blood work showed that. My urologist looked over the test they took and said the same thing. Plus my insurance company said the same thing and refuse to pay the bill. Over 21000.00.

                Comment


                • #9
                  If no SCI specialist, then the next best would be a neurologist. Plus, you should establish yourself with a doctor who knows this who has hospital privileges and then go to that hospital. You can download or have sent to you the AD card from Christopher Reeve foundation- but that does only cover the initial part of it- not the follow up.
                  CWO
                  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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                  • #10
                    Originally posted by TheRainman View Post
                    I had a similar experience feb. 11 this year. I had a clog catheter at night and was suffering AD with it. So I went to the ER close to me. And like the past they make me wait two hours to see me. Then once they take me back into the ER they start taking tons of blood. I told them i just need a catheter change and i will be on my way. But they said the doctor needs blood work. So they took blood work and then came back for more fifteen minutes later. Then took me to another room to change catheter. I asked the nurse if i can stay in my chair he said no. And my head was killing me. Then he starts changing the foley and tells me the only foley he has left is a 16fr or 20fr. So I asked him if their was much different in size. He said very little. So I said 20fr.. Which made it worse. Once changed the came in with xray machine for chest xray. Then tells me the doctor order me to stay the night. I told them i eant to leave. They said I need to talk to him. I bitched for the night nd the next day to talk to him and did not get to see him until the next day. So I spent a day and a half in there for no reason. And they had me hooked up to three different biotics. Then on Wednesday I saw him and told him I was leaving and he wanted me to stay. I told him you people here don't know how to tret people in my condition and if i stay you will kill me. When i went in i didn't have a urine infection my blood work showed that. My urologist looked over the test they took and said the same thing. Plus my insurance company said the same thing and refuse to pay the bill. Over 21000.00.
                    I know what u mean I went 1 time to er they tried the same stuff I was telling them change to cathe me I would be ok and then we change cathe they started same stuff I said no no luckily for me a nurse had google it went got a cathe and instant relief dr came in and said well.. good deal still over to much $$ smart nurse fruastrating

                    Comment


                    • #11
                      Originally posted by TheRainman View Post
                      I had a similar experience feb. 11 this year. I had a clog catheter at night and was suffering AD with it. So I went to the ER close to me. And like the past they make me wait two hours to see me. Then once they take me back into the ER they start taking tons of blood. I told them i just need a catheter change and i will be on my way. But they said the doctor needs blood work. So they took blood work and then came back for more fifteen minutes later. Then took me to another room to change catheter. I asked the nurse if i can stay in my chair he said no. And my head was killing me. Then he starts changing the foley and tells me the only foley he has left is a 16fr or 20fr. So I asked him if their was much different in size. He said very little. So I said 20fr.. Which made it worse. Once changed the came in with xray machine for chest xray. Then tells me the doctor order me to stay the night. I told them i eant to leave. They said I need to talk to him. I bitched for the night nd the next day to talk to him and did not get to see him until the next day. So I spent a day and a half in there for no reason. And they had me hooked up to three different biotics. Then on Wednesday I saw him and told him I was leaving and he wanted me to stay. I told him you people here don't know how to tret people in my condition and if i stay you will kill me. When i went in i didn't have a urine infection my blood work showed that. My urologist looked over the test they took and said the same thing. Plus my insurance company said the same thing and refuse to pay the bill. Over 21000.00.
                      There are a lot of lessons to be learned from this type of experience.
                      1. An emergency room isn't probably the best place to go if you know your autonomia is caused by a clogged catheter and you know you need a catheter change.
                      2. A better option than the emergency room of a hospital is an urgent care 24 hour facility. If you know you need a catheter change, take your own type and size with you, possibly even take all supplies necessary to change a catheter, lubricant, syringes to deflate and inflate balloon, betadine wipes etc.
                      3. A better option than the urgent care facility would be to train a friend or relative who can do this change for you on an emergency basis.
                      4. In lieu of a friend or relative, investigate signing up with care service like Bright Star or Home Instead Caregivers who can send out a nurse or nurses aid in an emergency, usually within 2 hours.
                      5. Follow up with your own doctor after having the emergency catheter change so he can check for stones or other problems that may be causing catheter clogs.

                      Comment


                      • #12
                        Originally posted by vjls View Post
                        I know what u mean I went 1 time to er they tried the same stuff I was telling them change to cathe me I would be ok and then we change cathe they started same stuff I said no no luckily for me a nurse had google it went got a cathe and instant relief dr came in and said well.. good deal still over to much $$ smart nurse fruastrating
                        I have gone to this ER several times over the years for the same problem and they never done that before. But they have always made me wait two the three hours before changing foley.

                        Comment


                        • #13
                          Originally posted by gjnl View Post
                          There are a lot of lessons to be learned from this type of experience.
                          1. An emergency room isn't probably the best place to go if you know your autonomia is caused by a clogged catheter and you know you need a catheter change.
                          2. A better option than the emergency room of a hospital is an urgent care 24 hour facility. If you know you need a catheter change, take your own type and size with you, possibly even take all supplies necessary to change a catheter, lubricant, syringes to deflate and inflate balloon, betadine wipes etc.
                          3. A better option than the urgent care facility would be to train a friend or relative who can do this change for you on an emergency basis.
                          4. In lieu of a friend or relative, investigate signing up with care service like Bright Star or Home Instead Caregivers who can send out a nurse or nurses aid in an emergency, usually within 2 hours.
                          5. Follow up with your own doctor after having the emergency catheter change so he can check for stones or other problems that may be causing catheter clogs.
                          Thank you for the great advise. The problem with 24 hour clinics in my area have told me they don't do foley changes. But maybe I should call a few more.
                          Family and friends are out. My nurse that replaces the foley every four weeks said i can call her. But I can't, I hate feeling like I am putting somebody out. I am weird that way.
                          And I really appreciate your advise. I know you know your stuff.

                          Comment


                          • #14
                            Originally posted by TheRainman View Post
                            Thank you for the great advise. The problem with 24 hour clinics in my area have told me they don't do foley changes. But maybe I should call a few more.
                            Family and friends are out. My nurse that replaces the foley every four weeks said i can call her. But I can't, I hate feeling like I am putting somebody out. I am weird that way.
                            And I really appreciate your advise. I know you know your stuff.
                            Certainly this doesn't happen a lot and if you have discussed this with your caregiver, she is probably being sincere when she says she is willing to help, and would appreciate a generous tip for helping you out. You aren't putting someone out when you are paying them well for their service. It seems a no brainer to ask someone with whom you have a working relationship to help and pay some out of pocket, rather than facing a fight with your insurance company over a $21,000 hospital bill! Yikes!

                            Comment


                            • #15
                              Originally posted by gjnl View Post
                              Certainly this doesn't happen a lot and if you have discussed this with your caregiver, she is probably being sincere when she says she is willing to help, and would appreciate a generous tip for helping you out. You aren't putting someone out when you are paying them well for their service. It seems a no brainer to ask someone with whom you have a working relationship to help and pay some out of pocket, rather than facing a fight with your insurance company over a $21,000 hospital bill! Yikes!
                              you're probably right. But she at a time in her life she doesn't work a lot, because she doesn't need to.

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