Em had her tilt table test this morning. Yay! She fainted. That is a strange thing to be happy about, but we got a result – it is the point of the test, after all – and hopefully she won’t have to have another one anytime soon. Not surprisingly, her results were … strange. They didn’t really fit neatly into an easy category. I am not too concerned about that. I think they can still try a few different medications that can help. And, if the Driscoll Theory is right, the postural intolerance/ tachycardia just might lessen with the Diamox and mast cell treatment. We are in some unknown territory, in my opinion, and it may take a little figuring out – but I don’t think it is a big deal.
Her results, of course we got just a brief explanation by the nurse, were odd in that while her heart rate went up as expected, it didn’t go down as expected when she fainted. She never went into asystole. Also very interesting, while she was out, they couldn’t get a blood pressure – even with the manual cuff. Validates what I have experienced over the last year. So, it will be interesting to get back to the neurology clinic to see Brian, my favorite physicians assistant, and see what he has to say.
The worst part was that I could not stay with her. I know, I know, I made a big issue in a previous post about how I was going to stay with her or no test. The nurse was quite lovely and I trusted her. She listened to our concerns, paid attention and was kind to Em. I left it up to Em – gave her the option of walking away. Then I told her she was going to have to make her own decisions during the test. If the pain got to be too much or she dislocated something, she could call it off and the nurse totally agreed with me. She did qualify that a bit and told Em that people typically beg her to stop just before they faint – she has to be mean and continue the test, but she wouldn’t continue the test if Em was in pain and her HR/ BP was normal. She also assured Em that if she fainted, they would come get me immediately. So, Em went ahead with the test. I was extremely proud of her and she advocated very well for herself during the test. She had a pillow behind her legs to stabilize her knees and communicated her needs to the nurse.
About 10-15 minutes into the test, a nurse came told me Em wanted her neck collar. Which was in the car, a couple floors down, way out in the parking lot. I practically ran to get it, not wanting to be away for long. The receptionist took me back to the room and opened the door to give the collar to the nurse. I overheard the nurse ask the receptionist to get one of the other nurses. That freaked me out a bit.
Turns out, the nurse knew a faint was imminent and couldn’t get the collar on Em in time. (Doing so probably would have delayed the faint and that wouldn’t have been good.) Instead of messing with the collar, she supported Em’s head and just needed another nurse to help finish the test. Em was out for about a minute while they tried to get a BP. Long enough to try to do it manually, so that had to take a little time.
By the time I got to her she was very pale, very sweaty and very tired. Her shoulder dislocated when she fainted and her back and hips were already painful, so that part was unpleasant but she survived. She drank some Sierra Mist and we were able to head out after just a few minutes.
Basically, it was certainly not fun but not as bad as she thought it was going to be. And we both survived me not being able to stay with her. She has been resting since we got home and seems to be perking up.
With any luck, she won’t ever have to have another TTT. But, I am not holding my breath!