How to Advocate Like a Boss - Part 2

To get caught up, be sure to check out Part 1 of this series.

Now that Jeff had finally been admitted, we had one hurdle crossed. But we still had the daunting task of figuring out what was causing these random, frequent autonomic dysreflexia episodes - and more importantly, we had to educate doctors and other staff on the urgency of our situation.

After getting settled into our room, we met with the hospitalist - we’ll call him Dr. Y. He was Jeff’s main doctor during the hospital stay, and everything flowed through him. If Jeff needed medication, Dr. Y had to approve it. If we wanted to see a specialist, Dr. Y would be the one to okay it. Dr. Y was our lifeline to getting things done.

And he had absolutely no clue what autonomic dysreflexia was.

So we explained. I handed him the printout I’d brought. He looked at it, but not long enough to take it in (unless he was a speed reader). He poked around Jeff’s stomach and asked where it hurt (ugh - THAT question again). He didn’t seem to think there was much urgency to Jeff’s current condition - or at least he didn’t give us that impression. He hinted that the antibiotics Jeff had been started on in the ER for a urinary tract infection should clear up this whole blood pressure issue. He said he would see us again tomorrow, and he left.

The next day we were met with a slew of specialists - a neurologist, an infectious disease specialist, and a general surgeon. We explained AD to every one of them. At this point, we pretty much had our elevator speech memorized - we had to recite it so often.

The neurologist ordered a brain scan. The infectious disease doctor ordered blood work. And the surgeon ordered a more in-depth scan of Jeff’s gallbladder to test if it was functioning normally. This last test is the one we were most interested in since Jeff and I were pretty sure the gallbladder was what was causing all this.

The brain scan and the bloodwork came back normal. But the gallbladder scan did not.

When the surgeon came in to tell us the results of the scan, she said Jeff’s gallbladder was not functioning optimally.

So you can imagine our surprise at what she said next:

“But there’s not an indication that the gallbladder needs to be removed. There’s no sign of infection. And while it’s not functioning optimally, it’s still within the limits of normal function.”

WHAT?

“We’re going to continue treating you with antibiotics for a urinary tract infection, as that’s what seems to be the cause of the issues you’re having.”

Clearly she’d just had a big swig of the Cool-Aid Dr. Y was serving up to the specialists behind the scenes.

Jeff and I were devastated. He’d already been on antibiotics for several days at this point, and his AD episodes were not decreasing. While the medicine may have been working on the UTI, it was not working on what was causing the AD. We felt like the only two people in the entire hospital that could see this.

Later that evening, about 30 minutes after we had dinner, Jeff had a whopping AD episode. His entire torso and neck erupted in red blotchy patches and his blood pressure sky rocketed to 170/120.

I raised the head of his bed as high as it would go. Usually this makes the BP go down within a few minutes. But this time it didn’t. I monitored his BP every 2 minutes. And after about 10 minutes had passed, it wasn’t going below 160/100. A nurse was in the room with us watching the whole thing unfold. I honestly think she had no idea what to do.

Jeff looked at me and said, “Get the paste.”

I quickly retrieved the nitro paste I kept in my bag for urgent AD situations like this one, and I applied an inch to his forehead. By the time I took his next BP reading, it had gone down to 150/100.

It was working.

That’s when the nurse finally spoke.

"Does the doctor know you have this medicine bedside and are using it?"

I turned to her and said, "I don't know if the doctor knows, but I'm happy to talk to him about it once my husband is stable. Right now, this medicine is saving my husband's life.”

To be fair, the nurse was not rude in any way when she asked her question. She was just following hospital procedure. But again, she clearly wasn’t understanding that an AD episode like this required quick and efficient action.

“We don’t mean to be disrespectful,” I explained. “But the truth is that in the time it would take you to obtain this medicine and apply it, my husband could have a seizure or a stroke. This is what we’ve been dealing with at home for the past two weeks. And this is why we’re here. My husband's body can't endure much more of this. We need help in figuring out what's causing it.”

During our talk, Jeff’s BP trickled back down to a normal level.

I wiped the paste off his head and got him situated in the bed. The nurse just stared at him as if the doors of Wonderland had been opened before her. She shook her head slowly and said. “I’ve never seen anything like that.”

******

Dr. Y bounded into our room that night at 10 pm. If he had learned about our earlier “illegal” use of the nitro paste, he made no indication. Instead he asked if Jeff was feeling better and commented that his blood pressure “looked good.” And it was - right at that moment. But we made sure to tell him about the multiple AD episodes Jeff had had that day when his blood pressure wasn’t so good.

He then started talking about sending Jeff home on antibiotics.

And that’s when we revved the engine of the advocacy bulldozer we came in on.

We politely but firmly refused to be sent home. We were not at all confident that the source of the AD had been identified and properly treated.

We asked to speak with the surgeon again. Or a different surgeon. It didn’t matter. But we needed to address the gallbladder issue again.

And we also wanted to speak with a urologist. Knowing that Jeff had bladder stones, we wanted to talk to a doctor about those being a potential cause of the AD.

We were at the end of day 4 and felt like we still hadn’t made much progress.

It was obvious that wasn't the direction Dr. Y wanted to take this, but he agreed and left.

******

In the late morning of day 5, a new surgeon entered Jeff’s room for a follow-up consultation. We started by explaining what was going on. We discussed AD. I gave him the handout and we waited in silence while he read it. He hadn’t encountered AD before, but after reading the handout he said it made sense to him.

Then Jeff asked him this: “If I wasn’t injured and could feel what was going on with my body, based on the results of the gallbladder scan, do you think my gallbladder would be causing me pain?”

The surgeon looked at him and said simply, “Yes. You would very likely be having intermittent pain.”

Jeff and I said - at the same time - “Then that’s what’s causing the AD.”

Jeff reasoned with the surgeon further. “I didn’t come in here looking to have surgery. But my wife and I strongly feel that the gallbladder is the cause of my problems and needs to come out. We deal with the side effects of my injury every day, and we know my body’s reactions very well. We know there’s something going on inside. Surgery is the last thing I want, but in this case, we think it’s warranted.”

The surgeon listened, nodded his head, and calmly said, “Yeah. I agree.”

After a little more discussion, and a confirmation that the surgery would take place the next day, the surgeon left the room and Jeff and I melted into a puddle of happy tears. We finally felt like we were making progress.

About 30 minutes after the consultation with the surgeon, Dr. Y walked into Jeff’s room talking on his cell phone. He was saying, “I’m going to let the patient’s wife talk to you to explain the details of her husband’s condition.”

Evidently this was our consultation with the urologist.

I took Dr. Y’s phone and was met by a calm voice on the other end who told me he was in his car on the way to another hospital to perform an emergency procedure. I had 10 minutes.

And I used every minute of the 10 I was given. I explained my husband’s condition and our concern over multiple autonomic dysreflexia episodes. I explained that we were pretty sure it was his gallbladder, but that we were also concerned that his bladder stones could be causing this as well. We had a very professional, calm discussion. The urologist was not familiar with AD, but he clearly grasped the concept. And near the end of our conversation said that “while bladder stones are not usually considered an emergency situation, if they are causing autonomic dysreflexia in a quadriplegic, then I would classify it as a reason for emergency removal.”

I finally felt like someone was not only listening to us, but was also understanding the urgent nature of what was happening in my husband’s body. Plus, I got a good vibe from this doctor when he pronounced the phrase “autonomic dysreflexia” back to me perfectly. Most doctors who aren’t familiar with it can’t do this without John Travolta-ing it.

We ended our conversation by agreeing that if Jeff was still having AD after the gallbladder removal, we would move on to the bladder stones. The doctor then complimented me on my thorough knowledge of spinal cord injury related issues, and I thanked him for his willingness to listen and his understanding. We hung up and I handed the phone back to Dr. Y.

So within the span of 30 minutes, we not only had a plan, we also had a back-up plan.

Can I get a hallelujah.

******

The next morning rolled around and Jeff was taken in for surgery. I sat by myself in an empty room, anxiously waiting for the surgeon to come tell me everything went well.

And she did about 90 minutes later. She said there were a “ton of gallstones” in his gallbladder, and was hopeful that this was indeed the cause of the AD.

And guess what…

It was.

Once the surgery was done, the AD disappeared.

After days and days and more days of AD happening over and over again, we finally had a break. My poor husband finally got some decent sleep. And this exhausted wife finally got a little bit of pressure relief on those frayed nerves of hers.

Now all we needed was home.

Still trying to figure out what's going on.

Jeff goofing around. He made me take this picture of him. I was laughing in the corner of the room the whole time.

Managing a few smiles before surgery.

I am one of the few people who walks around the hospital with an Ambu bag attached to my backpack.