Zebra
Part Three, Diagnosis
This is the third in a series of posts about Emily’s past few months. Here’s part one and part two.
The hospital stays were starting to blend. I only went home to feed the cats and check the mail and sleep. I became, more or less, an answering machine. Coordinator of information. The more people that knew what was going on the more times I played-back the same non-news. While Emily was scared and confined to a hospital bed, I was wearing thin as well.
For weeks they ran every test that they could run. They even did a CT scan of her head to look for tumors. A pattern was beginning to emerge though.
- Her condition got better with a 24 hour IV drip.
- Her heart rate only elevated upon sitting and standing.
- She became less symptomatic as the day went on (by 8 PM she was able to walk the halls with no problems).
Eventually they just figured she was crazy. Or at least a problem they couldn’t solve. The result of most admissions was that they pumped her full of fluid and sent her home with no medication, no answers and no follow up orders. It was time to take this into our own hands. We made an appointment with a cardiologist and came back a few days later. He had done some research and wanted to give her a test to prove his suspicions. Unfortunately, (of course), it couldn’t be done that day and we would have to wait. So we went home again.
For the next few days things got worse. We almost made it to the test day, but by the end of the second day her heart rate was 140 laying down and her blood pressure was dropping. I carried her to the car and bolted back to the ER so she could be filled with saline again. They had no beds and we went through the same 2-hour explanation that we had given so many times before.
We spent that night in the ER and finally made it to the test. A tilt-table test, to be more specific. The tilt-table was a flat board with straps running across it. It looked like it had been there forever. It had a pneumatic piston that lifted the head of the board to a 90º angle. For the hundredth time, they hooked Emily up to a tangle of wires and started an EKG for monitoring. Passing the test meant not going unconscious from excessive heart rate and low blood pressure.
She failed inside of 30 seconds.
She was admitted again, but this time we saw a new doctor. A nephrologist (a doctor specializing in blood pressure and renal function). He was short, round and bright. The kind of doctor that you hear about but never meet. He reassured Emily that he knew what was wrong with her and that he could help her manage it. It was all going to be ok.
She had Postural Orthostatic Tachycardia Syndrome, or POTS, a syndrome where your heart rate goes up and blood pressure drops upon standing. POTS was a condition of exclusion, meaning that it was more a collection of symptoms than a true disorder. They didn’t know why people got it or how to make it go away. Many people with POTS live normal lives, but there are those whose symptoms are so intense that they have trouble walking and living unassisted. Anybody can present at any moment. Strangely, it seems to effect “high-achieving young women” (seriously).
With POTS, your body seems to forget how to regulate itself. Physiologically, the best way it was explained to us it to imagine a bucket full of water with a pump cycling water in and out of it. Now imagine that the bucket suddenly turns into a bathtub but the water volume stays the same. The pump has to work harder to maintain a constant pressure. As Emily stands up her veins and arteries dilate open increasing the volume that her blood has to fill, causing her HR to increase, her blood to pool and her pressure to drop.
Now it had a name and we had a doctor. It wasn’t much, but it meant that could start down the long road of getting her back to life.
Zebra
Part Two, The Hunt
This is the second in a series of posts about Emily’s past few months. If you missed part one you can read it here.
The next morning after her episode the ER doctor taking care of Emily got her an echocardiogram. It’s essentially an ultrasound for your heart. It came back fine. No abnormalities. A cardiologist came by and ran down some of the basics. They finally gave her a beta blocker, which effectively slows down your heart rate. After a few days of no one being able to find anything physically wrong with her, Emily was discharged from the ER. She was given no follow up instructions. They said is was a fluke.
So she went back to work. She took a beta blocker in the morning and it seemed to keep her rate down. We had decided that she probably shouldn’t drive until we had this thing managed so I drove her there in the morning and picked her up in the afternoon. Around noon on her second day back I got a call from her. For the second time in a week it was not her on the other end.
I rushed back down to the ER. I was told that she was taking an exam at work and almost passed out sitting down. Luckily her attending was next door and came by to check on her. By the time I was allowed back to see her she was stabilized. Pumping her full of IV fluids seemed to help. It was a rainy day so the ER was flooded with accident victims and there were no beds in the hospital. The only bed they had was in the trauma bay. She was placed between two people who had been in a car accident. With each other. It made for an interesting human drama and helped to pass the time.
On your second visit to the ER for the same problem, you tend to be taken more seriously. An electrophysiologist came by and checked on her. This time the tests were getting a little more serious, checking for thyroid disorders and blood clots. He had her stand up and sit down to see how she reacted. She nearly passed out. All her tests and labs came back normal. You could tell by the look on his face that he was puzzled. He told her that he wanted to have her admitted onto the cardiac floor. There were, of course, no available beds. So we stayed in the ER overnight and on into the next afternoon.
Fact. the environmental services team buffs the floor in the MVC ER at 4 in the morning, every morning.
Fact. If you have a vagina you will have your blood taken at 5 in the morning, every morning to make sure you did not become pregnant at some point during the night.
We received some worrying news early the next morning. She was listed as NPO, a designation given to someone who is about to have surgery so that they will not be given anything to eat or drink. When we asked about it the resident told us that she was scheduled for a heart ablation, a procedure where they insert a catheter into your heart and use radiation to kill part of it, forcing your heart to beat permanently slower.
She was eventually admitted. We fought to hold off on the ablation and the doctors agreed that that was a step too far at this point. She spent a total of 6 days on the cardiac floor for monitoring purposes. No one had any clue what was wrong with her. They were starting to see some of the symptoms though. She was retaining fluid like someone suffering from dehydration, although her labs were coming back that she was hydrated. There was no evidence of any virus having effected her recently. Without a beta blocker, her heart rate would jump to 140 upon standing and return to normal when she laid back down. Her blood pressure was dangerously low upon standing. She had no appetite.
Quite a few specialists came by to see her. Cardiology, electrophysiology, endocrine, etcetera. As expected they all ran the tests that they knew how to run. Have you ever heard the saying, “when all you have is a hammer everything looks like a nail”? I’ve come to realize that many specialists tend to fall victim to that. Heavily. If you see a cardiologist, for example, they’ll examine your heart in detail without looking at anything else. They all assume that the last guy did a good job checking the other stuff. Needless to say, none of them were of any help.
Speaking of sayings, doctors have one as well. “When you hear hoofbeats, think horses, not zebras”.
This is part of their basic training. Work up the most basic possibilities and rule them out. 99 out of 100 problems are diagnosed this way. Sometimes, however, this brand of logic leads to misdiagnosis, or no diagnosis at all. Sometimes a patient is that 1 out of 100.
It was time to start looking for stripes.
