Few people take the time to tell their personal story about how life sometime can be difficult and share their pain.
Pain and joy are universal and they are the ones that touch the people the most, specially when joy emerges after a series of painful moments. I didn’t read the first and second part of this story yet, but I certainly been touch by this last one and felt Emily’s pain.
I will certainly send her all my positive energy, so she can recovers quickly and feels the joy of life.
Thanks Jeff for having shared those moments of your life.
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.
