Advice Needed: Helping Nurses Recognize a Dangerous but Obscure Condition

[thehipcrip]

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?

[Anna Flaxis, BSN, RN]

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.

[cherrybreeze, ADN, RN]

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?

[handyrn]

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]

Your forum name is awesome.

[Anna Flaxis, BSN, RN]

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.

[Anna Flaxis, BSN, RN]

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.

[handyrn]

Stargazer-you bring up some good points. If I were an ER nurse and didn't know about AD, I would have probably not done anything either until the Dr. saw her. Like I said on another post, when the crisis happens to our own family/friends, we forget to use our brains. We are seeing it from the inside, not from the point of view of the nurse on the "outside."

I know that my friend knows EVERYTHING there is to know about her condition. I know that she is very in tune with her body. I know that she is not a dramatic person. I know that her Dr. trusts her to know what is going on in her own body. And she knows this too. But the ER staff doesn't know this. And I wasn't looking at it from that perspective, so thanks for making me realize this.

As for the Dr., I don't remember which one it was, so I don't know if he is a nice guy or not. However, I remember that she had doctored with the same guy for years and I think what happened was that HE knew that she was very in tune to what was going on and knew that the nurses should have believed her, but again, he was looking at it same as me, knowing her personally and his brain went on strike and he lashed out. It's a very small town and when you Dr. with someone for 20 plus years, and see each other in social circles as well, it's hard not to become a personal friend of the doc.

So again, thanks for opening my eyes.

[nurseprnRN, BSN, RN]

does that thing you gave them to explain about ad have in big red letters at the top something that says "autonomic dysreflexia is a life-threatening complication of sci" ?

if not, i'd redo it to have that.

also, offer to come in to a staff meeting do do a brief inservice on it. if this is the place you're going to be going whenever you need er care, you might as well make sure they know you.