Libby checked into the hospital's outpatient cardiac unit at 10:15 this morning and, to quote the cardiologist, Elizabeth has the "easiest diagnosis of POTS [he's] ever made." She was diagnosed within five minutes of starting the test.
As soon as we arrived, Libby was put into a room with a technician for a tilt table test. Basically, the test involves strapping the patient to a table and moving her from a lying down position into a standing position. Patients with POTS will struggle to maintain a regular heart rate and blood pressure when changing positions so the tech and cardiologist will monitor the patient's heart rate and blood pressure when she changes position. If the patient faints within 30 minutes of being moved from a supine to standing position, it can be a positive POTS diagnosis. If the patient doesn't faint within 30 minutes, the tech administers IV meds that increase the heart rate to see how the patient responds with a faster heart rate.
We didn't even get close to having much of that happen. Basically, the whole thing was a bit of a disaster but it sure made it easy to diagnose her.
First, the nurse blew two veins trying to get an IV started on Libby – one in her hand and one in her arm. Libby usually has excellent veins but she had to be dehydrated and fasting for this test so her veins weren't cooperating at all and it hurt a lot.
As the nurse was trying to get the needle into her arm, I saw Libby try to cover her mouth to keep from crying out and then her neck jerked just a bit. I knew exactly what was happening and jumped up just as she had a tonic-clonic (grand mal) seizure. I caught the back of her head before it hit the wall but it scared the crap out of me and the poor nurse didn't know what was going on. The cardiologist came running in, as did another nurse, and we got her flat on the table so she didn't fall or get hurt but it took us a bit to catch our breath and move on.
She hasn't had a seizure in months and I think we were all a little frazzled after that. We just hadn't expected that to happen.
The cardiologist offered to reschedule but then he and I both quickly decided that we needed to know and to go forward with it.
After letting her rest for a few minutes and having the cardiologist check her vitals, another nurse finally got an IV started (after blowing a third vein) and they strapped Libby down on the table. Within just a minute or two, Libby told the cardiologist she didn't feel well, tried to reach up to her head, and then promptly passed out. Her heart rate had jumped up by 30 beats/minute and then plummeted down to only 48 beats/minute within seconds and the cardiologist called off the test.
I think we were all a little unnerved by watching by the seizure and then seeing her faint so quickly and he laughed a bit while saying it was the "easiest diagnosis of POTS [he's] ever made" and that it was the "fastest tilt test [he's] ever seen." He said she obviously has a very strong positive POTS diagnosis and we could stop all further testing.
So, okay. Now we know and we can move forward.
We've already been treating her as though she had POTS for this past week so now we step up our game just a bit. She's been feeling great and made it through a half day of school yesterday so we know we're on the right road but it's also a fairly severe case of POTS and may need medication to help her control it at some point. But because she's already been feeling better by increasing her water intake, sodium intake, and treating her anemia, the cardiologist wants us to continue to treat it on our own first.
In fact, he doesn't even want her to supplement with Gatorade or Pedialyte at first. She's already on a bunch of meds and vitamins and other supplements so we're all trying to avoid treating her with anything else artificial. Obviously, if she's still struggling, we'll change that but we'll see what happens on our own first.
Increasing her blood volume is the best way to treat POTS so increasing her fluid intake and salt intake is key. They other component is strengthening her heart so that her heart will start pumping more blood with each heartbeat and her heart rate decreases. So she'll have to walk on the treadmill (with supervision) every day, too.
And we cross our fingers that we'll get it under control ASAP. I'm not sure either one of us can take much more of this.
Thanks to everyone for your love and support. We're home now, it's snowing hard outside, and we're snuggling with the cats in front of the fire. TLC all around!
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