How to Advocate Like a Boss - Part 1

Autonomic dysreflexia is a syndrome in which there is a sudden onset of excessively high blood pressure. It is more common in people with spinal cord injuries at T6 or above. --WebMD

Autonomic dysreflexia is an important clinical diagnosis that requires prompt treatment to avoid devastating complications. – “Autonomic dysreflexia: a medical emergency” published by National Center for Biotechnology Information

Autonomic dysreflexia (AD) is a potentially life-threatening medical emergency that affects people with spinal cord injuries at the T6 level or higher. When triggered, AD requires quick and correct action or there may be serious consequences such as a stroke. Because many health professionals are not familiar with this condition, it is important for people who are at risk for AD, including the people close to them, to recognize the symptoms and know how to act. –Christopher & Dana Reeve Foundation

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When Jeff was in the spinal cord injury rehab unit, the topic of autonomic dysreflexia (abbreviated as AD in the SCI-world) was drilled into us. During rehab, there were classes that all patients and their families had to attend. AD had a class all its own. It’s THAT important.

The above quotes define AD in easy medical speak. If you look up AD, you'll find all kinds of information straight outta medical school textbooks filled with unpronounceable words. I’m not even going to pretend I understand it at that level. But I do understand it at a very practical and hands-on level. Put very basically in someone like Jeff, whose brain and body no longer communicate with one another because of his injury, AD happens when there’s a pain stimulus below the level where he can feel, and his brain doesn’t know about it. So his body reacts with a rapid rise in blood pressure.

Luckily, Jeff can usually tell when AD is happening. He gets this tingly feeling that starts around his stomach area and spreads all the way up into his face. That’s when he asks me to check his blood pressure. That’s also when I lift his shirt to see if he’s rashy. If he is, it’s definitely AD.

And if it’s AD, I drop everything and act.

If we act fast enough to get his BP down, we can avoid the pounding, debilitating headache. He’s woken up a few times in the middle of the night with a clogged catheter and an excruciating headache. Those have been some of the scariest, most intense moments since his injury.

But even in those scary incidents, we were able to figure out the cause of the AD.

For a week, Jeff had been having random episodes of AD where his blood pressure would spike. Sometimes just sitting him up as high as we could would work to get the BP back down to normal. Other times we needed to use the nitro paste on his forehead to bring the BP down.

So while we were able to manage the AD symptoms, in none of those occurrences could we figure out what was causing the AD.

These episodes were happening round the clock without warning. We thought maybe his air mattress was defective – that it wasn’t alternating his weight properly. I would check his skin thoroughly. Every faint red mark on his body was a suspect. But after a complete investigation, nothing stood out as something that would cause AD over and over.

We came to the conclusion that something was happening internally, and we needed the help of medical professionals to figure it out.

ER – Round 1

At 11 pm on a Tuesday night, I called 911. Even though Jeff was alert, it was still a very unnerving call to make.

We spent 4 hours in the ER. We explained everything that had been happening over the last week. We introduced the phrase ‘autonomic dysreflexia’ and were met with blank stares. And - of course - not once during those four hours did Jeff have an AD episode. They drew blood and found no infection. In the end, a very hurried, quick-worded doctor who we saw a total of 60 seconds during our stay, entered our curtained space like a gust of wind. He told us there was nothing further they could do.  When we asked for further tests, he said that would just be “digging” for something wrong, when there was clearly nothing wrong.

And he sent us home.

Here’s the update I posted on Facebook after we were home:

We spent the early hours of this morning in the ER for Jeff's blood pressure fluctuations. We've been dealing with extreme high and extreme low pressures the last few days.

We are exhausted from having to explain autonomic dysreflexia to every medical professional we encountered this morning. And frustrated by how many of them seemed to not grasp how serious it is.

We are home now and worn out from worry and lack of sleep. This life has been hitting us hard the last few days.

Hoping this bumpy path will soon be followed by a smooth stretch.

ER - Round 1

What my update didn’t mention was how defeated we felt. It was as if we'd been completely and utterly discarded. Like our one beacon of hope as to where we could find answers had been extinguished.

We kept asking each other What could we have done differently?

While we weren’t expecting immediate answers, we did at least expect some level of common sense to emerge. Perhaps something along the lines of ‘Hey, this guy is paralyzed from the neck down – maybe there’s something going on internally that he can’t feel – maybe we should check this out further.’ But evidently that would require thinking outside the box, and working with the patient - listening to and understanding the concerns of someone who lives with a unique chronic condition, … and, of course, ‘digging.’

And as for autonomic dysreflexia, I don't mind so much that most doctors aren't familiar with AD. I don't reasonably expect that they would be if they don't work with SCI patients. What I do mind is when we explain to them what it is and how serious it is, and our knowledge and experience with it isn't respected. 

Back home, the AD episodes continued.

After three more days of exhaustion, tears, and lots of swearing, we were back in the ER.

And while we once again arrived in an ambulance, in theory we were actually driving the advocacy bulldozer. And this time we weren’t leaving until we made headway.

ER – Round 2

We arrived in the ER in similar fashion as the last time. Jeff on a stretcher and me weighed down with bags of medical supplies (I always carry one item of everything we would need in an emergency – even to a hospital). But this time I was armed with an additional tool: a print-out containing information on Autonomic Dysreflexia. A full sheet with graphics and bold lettering explaining what it is, what some causes could be, and most importantly, that it is a life-threatening condition if left untreated.

Once again we went through the same process as three days before. We explained what was happening. We told the EMTs, the woman who admitted us, and that nurse that these blood pressure spikes were unusual. That we knew Jeff had gallstones, kidney stones, and bladder stones, and we were concerned that something was going on with one of those that was causing this problem.

We laid it all out once again.

We were met with another hurried doctor who ordered a slew of tests. Besides more blood drawn, they also did a chest x-ray, a urinalysis, and a CT of his abdomen.

We were encouraged by this movement!

The blood work came back normal. So did the chest x-ray. The urinalysis showed a urinary tract infection (UTI), something not uncommon in people with in-dwelling catheters. In fact, Jeff’s urine results always comes back showing bacteria. They started him on antibiotics even though we said we typically don’t treat it unless he has a fever, which he didn’t. Still, we thought it couldn’t hurt, so we went with it.

Then the rushed doctor dashed into our cubicle announcing the results of the CT scan. 

He said it showed nothing remarkable. 

Then offhandedly asked, “Did you know you have gallstones?”

“Yes!” we told him wondering why he didn’t already know that given that I’d told no less than three staff members on our way in.

“And we’re concerned that those could be causing the problems Jeff’s been having,” I said.

“Gallstones wouldn’t cause blood pressure fluctuations,” the doctor said bluntly.

I explained that the blood pressure fluctuations Jeff was experiencing were a result of something else. That there was a stimulus making his blood pressure spike. And we’re concerned the gallstones could be that stimulus.

Again, the doctor was adamant about gallstones not being a viable source of Jeff’s issues.

“Where’s your pain?” the doctor asked Jeff – a question he’d been asked a dozen times since we arrived.

The problem is, how do you adequately answer this question when you are paralyzed from the neck down and pain doesn't present itself like it does in every other patient this doctor encounters? How do you answer it to make a doctor understand that just because you don’t feel pain like an able-bodied person doesn’t mean the pain's not there?

Because explaining it like that wasn’t working.

The doctor disappeared and we were left to be monitored occasionally by nurses.

ER - Round 2. Between AD episodes. At least this time Star Wars was on!

We were in the ER a good 7 hours this round. And this time Jeff had plenty of AD episodes. The blood pressure cuff on his arm had been set to monitor his BP every 30 minutes. But I quickly learned where the button was on the monitor to take it more often. Because when AD happens, BP needs to be monitored every 3 minutes. And while I’m not usually one to go against the rules, I’ve learned that when my husband’s life is on the line, the rules can just suck it.

Over and over, we dealt with AD. Blood pressure goes up, rash comes on, head of the bed is raised, we wait, blood pressure goes down. Sometimes nurses were even present when it happened. We explained that THIS was AD. THIS was why we were here. THIS was what we needed to figure out.

The nurses watched. Then they left.

I know nurses are supposed to remain calm under emergency situations, especially ER nurses. But there was no indication that anyone was taking any of this seriously.

Finally the doctor swooped in once again - this time with an official diagnosis. He proclaimed that the UTI was the cause of all this, and that he would be sending Jeff home on antibiotics.

Wait ... what?

I don't think so.

Remember that bulldozer we came in on?

We told him we completely disagreed that the UTI was the cause. While UTIs can certainly be serious in quadriplegics, we'd had plenty of experience with them, and they have never caused AD like this. Something else was causing these blood pressure spikes, and we needed more answers.

“I would think that blood pressure fluctuations in someone with your condition would be common,” the doctor said to Jeff.

“They’re not,” we said in unison.

Then my husband drove home the point: “Look, if you send us home, we’re just going to be back here in a few more days. Something is going on in my body and we need answers.”

“Fine! I’ll admit you and run more tests,” the doctor said. He sounded utterly exasperated. “What’s your insurance?”

We told him and he wrote it on a sticky note. He then turned to re-swoop out of the curtain, but pivoted back abruptly. “I’m sorry for being short. It’s just that I am beyond busy!” Then he turned and disappeared.

I didn’t know what I wanted to do more: hug him, flip him off, or present him with an Oscar. Clearly this man was overworked and understaffed. But guess what, so were we. And at this point, we’d take the admission any way we could get it.

We were one step further that we were last time. 

But our journey had really just begun.

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Check out the continuing story in Part 2!