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Advice Needed: Helping Nurses Recognize a Dangerous but Obscure Condition

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What is the best way for a patient to alert you to and educate you about autonomic dysreflexia (AD), an emergent, potentially life-threatening medical condition most doctors and nurses have never heard of?

Autonomic dysreflexia (AD) is a condition that can occur in anyone who has a spinal cord injury at or above the T6 level which causes the blood pressure to rise to potentially dangerous levels. The primary risk of Autonomic dysreflexia is stroke. It is a potentially life-threatening condition. If Autonomic dysreflexia is left untreated, the body's attempt to control blood pressure will severely decrease the heart rate. This, combined with uncontrolled high blood pressure, can be fatal. For this reason, it is very important to treat this condition as soon as possible.

However, getting doctors and nurses, especially ED triage nurses, to recognize and respond to autonomic dysreflexia is an ongoing challenge for people with spinal cord injury/damage (SCI/D).

It happened to me during a recent trip to the ED for a gallbladder infection, the pain from which triggered AD. When I arrived at the hospital, my BP had spiked to 215/119. I was sweaty and had a severe headache, blurry vision, and anxiety, all of which are symptoms of AD. Yet despite alerting both the nurse who took my vitals and the triage nurse that I was having autonomic dysreflexia and showing them the wallet card I carry about AD, neither recognized my condition as potentially life-threatening -- I was actually taken back for treatment after a pre-teen boy with an ankle injury who was in no apparent distress. Luckily, I made it through this bout of AD without incident (except for the pounding headache).

I wish I could say that my experience was the exception, but it's not. Almost everyone I know who is prone to AD has had problems at one point or another with getting health care professionals to recognize and treat autonomic dysreflexia, even when we bring educational materials about the condition with us. While there are a lot of nurses out there who listen to what we're telling them, there are still too many who dismiss us as demanding patients who have self-diagnosed off of the Internet and are trying to tell them how to do their job.

So I'm coming to those of you who work the front lines of medicine for advice. What's the best way for someone suffering from AD to help you recognize the condition and help get us the immediate treatment we need?

NeoPediRN

Specializes in Pediatrics, ER. Has 6 years experience.

I wasn't there to witness the interaction objectively, so I can't comment on the actions of the medical team. However, by your account it definitely appeared you were in distresss, and hopefully next time (if), you'll be treated immediately. Even someone without a history of AD is in danger of stroking with a BP that high. Were you bradycardic?

i would think a nurse who works neuro, would be alerted to this risk.

working with sci pts, most, if not all nurses would know what to expect...

even a wrinkled sheet could precipate this crisis...as can constipation.

re the er nurse, i don't understand why you wouldn't have been immediately eval'd.

even if the triage nurse didn't know about ad, a bp of 200+/100+ is enough to warrant immediate assessment.

leslie

No Stars In My Eyes

Specializes in Med nurse in med-surg., float, HH, and PDN. Has 43 years experience.

Get a Medic Alert bracelet or pendant; and carry a note from your physician, which you have had copied and shrunken in size and laminated. You can do the same for some text which explains the basics in a nutshell.

LouisVRN, RN

Specializes in Med/Surg.

Do you see a neurologist that works at the hospital? Maybe you could see if he could give an inservice and ask to tell your story there.

I did an inservice on autonomic dysreflexia in pregnancy when I worked L&D. Hope I did my small part to spread the word about this condition. The nurses I worked with had never heard of it but now they have :)

I actually just wrote an article about that for Complex Child Magazine! :-) I was inspired after caring for a patient who had a history of that. Very scary stuff! This patient was in the med-surg unit and although I'm sure they could figure out the patient was in danger, they might not have known to check for whatever was triggering the event in order to stop it.

Even someone without a history of AD is in danger of stroking with a BP that high. Were you bradycardic?

While my resting heart rate during triage was 25+ beats per minute slower than my very high baseline, I was still WNL and not obviously bradycardic.

@NeoPediRN and Leslie -- That the nurses at my small local hospital didn't recognize the AD is one thing. But hearing from you both that anyone with a BP that high, regardless of a history of AD, should have been assessed immediately tells me there are bigger problems at hand.

Get a Medic Alert bracelet or pendant; and carry a note from your physician, which you have had copied and shrunken in size and laminated. You can do the same for some text which explains the basics in a nutshell.

I already carry a wallet card about AD, which I presented to both the nurse who checked me in and took vitals, and the triage nurse.

The Medic Alert bracelet is a great idea.

linearthinker, DNP, RN

Specializes in FNP. Has 25 years experience.

I don't know any physician or nurse who doensn't know what autonomic dysreflexia is. How strange.

doomsayer

Specializes in hopeful ER/Surg.

I am far from the front-lines, being a student- but you are taking an excellent step right here by being vocal. It seems the overall tendency is to punt to the specialist or someone else though, doesn't it?

Education is key!

Thank you for sharing.

RhinoRocketRN

Specializes in Mixed ICU, OHU. Has 3+ years experience.

I know of this because of the old Discovery Health channel!

It happened to me during a recent trip to the ED for a gallbladder infection, the pain from which triggered AD. When I arrived at the hospital, my BP had spiked to 215/119. I was sweaty and had a severe headache, blurry vision, and anxiety, all of which are symptoms of AD. Yet despite alerting both the nurse who took my vitals and the triage nurse that I was having autonomic dysreflexia and showing them the wallet card I carry about AD, neither recognized my condition as potentially life-threatening -- I was actually taken back for treatment after a pre-teen boy with an ankle injury who was in no apparent distress. Luckily, I made it through this bout of AD without incident (except for the pounding headache).

I can explain why this might have happened to you in my ED.

We use the ESI triage system. Your presentation would have garnered you an acuity level of 2.

The ankle injury would have been an acuity level 4.

In my ED, we run a separate "Fast Track" area, staffed by an MD, RN, and a Tech. All of the level 4s and 5s go there. Everyone else (acuity level 3 and above) goes into the main part of the ED.

Because the Fast Track area is run separately, patients can be moved from the lobby and back to a room quickly, because turnover is so fast that beds become available in short order. In the main ED, workups take longer because they involve more resources, plus there are ambulances coming in that need beds, and so beds don't become available as quickly. It is not unusual for every single bed in the ED to be filled, leaving no place to put new patients coming in. Because of this, it is not at all unusual for 4s and 5s to be roomed before the 3s and above.

Since everybody waits in the same lobby, it's not unusual for people to notice that someone who hasn't been there as long or isn't as sick is being taken back sooner.

It is quite possible that the triage nurse did in fact recognize your condition and the severity of it, but simply had no bed to put you in.

One charge nurse I work with will fill every bed in an effort to empty out the lobby. This leaves us no place to put the really sick ones that need to be roomed immediately. The other charge nurse I work with always leaves one bed open, preferably a trauma bed. Had you come in when the former CN was on, you would have had to wait. Had you come in when the latter CN was on, you would have been roomed immediately.

Some doctors are really good about getting their workups done and their patients dispositioned efficiently, while others keep patients sitting for far too long. Sometimes, the charts are just not moving, and you've got nurses sitting around twiddling their thumbs waiting on the doctors.

Sometimes it's not about knowledge of the medical condition, but rather, other factors that have nothing to do with it.

Edited by Anna Flaxis

cherrybreeze, ADN, RN

Specializes in Med/Surg.

I don't know any physician or nurse who doensn't know what autonomic dysreflexia is. How strange.

I was going to say something similar to this, I have known since nursing school with AD is, and how it can present. I was surprised to read in your OP that "most doctors and nurses" have never heard of it. I wouldn't have thought that?

In your situation, since it is a small hospital that you go to, I would definitely ask your Dr. or someone on the hospital staff if they could do an inservice on it for all the hospital employees.

I had a good friend who was a quad. Her Catheter fell out which threw her into AD and she went to the ER. Her friend that took her there was in the waiting room. The staff there also did not know the severity of what was happening and left her laying in a bed even though she told them what was going on and if they would just cath her it would fix the problem. They didn't believe her. She ended up yelling until her friend heard her and came into the room and cathed her himself with a straw or pen tube or something.

Dr. finally arrives and boy did the ER staff get in trouble I guess. He was an older doc and this was before the days of Web MD and people were not self diagnosing so much. He told the staff that they really needed to listen to their patients and give them credit for what they knew was going on with their own bodies.

Anyway, I just basically agree that education is the key.

LegzRN

Specializes in CEN, CPEN, RN-BC. Has 4 years experience.

Your forum name is awesome.

I was going to say something similar to this, I have known since nursing school with AD is, and how it can present. I was surprised to read in your OP that "most doctors and nurses" have never heard of it. I wouldn't have thought that?

Exactly. I learned about AD in nursing school, as it is a standard part of the curriculum. I can know all about your condition, but if I don't have a bed to put you in, you're going to have to wait until someone else gets discharged or transferred up to the floor to be roomed. In the meantime, I'll be watching you like a hawk.

I had a good friend who was a quad. Her Catheter fell out which threw her into AD and she went to the ER. Her friend that took her there was in the waiting room. The staff there also did not know the severity of what was happening and left her laying in a bed even though she told them what was going on and if they would just cath her it would fix the problem. They didn't believe her. She ended up yelling until her friend heard her and came into the room and cathed her himself with a straw or pen tube or something.

What were her VS?

What are the protocols in that ER for what nurses may and may not do prior to an examination by the MD?

Did they actually say "I don't believe you"?

Sounds like she was put in a bed right away, but the nurses had to wait for a doctor's order to be able to cath the patient. Some doctors will not give such an order if they haven't laid eyes on the patient, so the patient will have to wait until seen by an MD for anything to happen. Just because you're in the emergency room does not mean everything is going to happen immediately (excepting resuscitation, trauma, cath alert, stroke alert, etc). There are processes and procedures there just as there are in any medical setting.

Dr. finally arrives and boy did the ER staff get in trouble I guess. He was an older doc and this was before the days of Web MD and people were not self diagnosing so much. He told the staff that they really needed to listen to their patients and give them credit for what they knew was going on with their own bodies.

This sounds like a terrible doctor to work with.