Fiona had to see an Electrophysiologist (the electrician of the heart) yesterday because of her EKGs she was showing during the experimental drug trial. She was having a prolonged QT which means the electrical impulses in the heart were going too slow and if she skipped a beat during that time she would die. So, needless to say, she needed to be seen by a cardiac specialist who deals in heart rhythms. Good news is, he thinks the problems is "probably" caused by 2 of the medications she takes AND she always runs low potassium and low magnesium. The bad news is she will have to now check all medications she takes for the rest of her life to be sure they don't caused prolonged QTs because, though he doesn't think she has the hereditary disease, she may have the predisposition for it. (Fiona spent her first 63 days of life in NICU and I know absolutely they told me there was nothing wrong with her heart. He said it would have shown immediately if she had the hereditary prolonged QT disease.) He was confident that this will be fixed problem until..............he found out she has passed out in the past for no reason. #1 problem. We can't explain it and it isn't enough to know if it was significant or not. Fiona frequently complains of feeling dizzy; like she feels like she is going to pass out.
Then she explained that she frequently gets times when her hearts just races and pounds. She gets light headed and very shakey with those episodes along with chest pains. He looked at all her past EKGs and Holter monitors and noted that she does have sinus tachycardia but he said they don't treat that condition unless it is really severe. What it entails is killing the sinus node (the part that makes the heart start beating) and then put in a pacemaker. (UM, MOM says I don't think so!!) As long as her NORMAL consistent regular beats are below 150 she is fine, though she may not be comfortable.
So as he put it, she will have a long relationship with him and he will monitor her and get more tests done. She does have to do another Event Monitor for him soon. He said that genetic testing is not 100% so he doesn't recommend it AND she isn't throwing a classic prolonged QT EKG typical of the disease.
He wrote his notes and I asked him to put in the notes when she should go to ER, 1. so we are clear and 2. so ER doctors won't give us the crazy eye when we come in AGAIN. He emailed all of Fiona's doctors and walked out with us since we were at the end of his day. By the time we got home, Fiona's neurologist was calling to say she got the message from the Electrophysiologist and she needed to talked to Fiona about her medications for her migraines. In less than 2 hours from the time we left the appointment! WOW!!
What was amazing is he said she is so complicated that he didn't want to add another label, condition or disease to her list unless he can prove it. So the best thing was to do what was most obvious and that is to adjust her medications and see if the QT shortens and she starts feeling better. YAY, we really liked this doctor. We both came out feeling better and happy we have yet another doctor who really knows his stuff and is there to help her. It is such a good feeling when you see a doctor that makes you feel that way.
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On the non-medical front, Fiona is doing well. She has been helping babysit a little boy and been working out in the backyard weeding the planters. She has been feeling pretty good and enjoying the time with her boyfriend and friends.
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