It was around 6 a.m. when I woke up to turn in bed. I can turn partly but not all the way and I need to ask someone to help me. I tried to call my aide when I suddenly felt my heart starting to race. I started to panic. It’s a good thing that my mobile phone was beside me. I dialed my parents room and asked them to come to my room.
They found me with my heart racing and pounding so strong that when you put your hand on my chest you’d really feel the beats. It was racing so fast I honestly thought that it was the limit. My heart would not go any faster. I was scared that it would stop.
My mom held my hand and asked me to try and relax. As the minutes passed by my heart rate started to drop. In around 3 mins it was almost back to normal. Whew! That was quite a scare. I spent most of the day in bed resting.
We spoke to the doctor treating me with Myozyme and we also tried to call my physician but he was out of the country. It could not have been Myozyme related because it was almost 2 weeks since I had my dose. It should have been out of my system already.
After a whole day of resting I was feeling much better. Well enough in fact to go out. I still managed to go about with my plans for that weekend.
We scheduled an appointment with a cardiologist the following Monday. It was just right before checking into the hospital for the Myozyme infusion. I wanted to get an all clear from a cardio before getting the infusion.
The cardio listened to my heart and had an ECG done. She said that my heart seemed fine. The rhythm was good however it was still slightly elevated. She asked if I was taking any caffeine, I told her I drank coffee in the morning and iced tea during the day. She told me to stop it until we figure out what’s wrong.
She cleared me for my infusions and so I got my Myozyme the following day. The infusion went without a hitch and I was home at our scheduled time.
In my opinion it could be several things. First could be cause not getting enough oxygen while sleeping. The settings of my machine might not be right for me anymore. The next would be the caffeine, however I did not take that much caffeine. The doctor said that my metabolism might be changing and that I could be more sensitive to caffeine now. The third would be that the Mitral Valve Prolapse I have is getting worse. Among all three I really hope it’s not the third.
A 2D Echo before we started Myozyme showed that I have Mitral Valve Prolapse but the cardio that looked at it said that it was insignificant. The efficiency of my heart was still good. In fact in a 2D Echo done 6 months after it showed that the efficiency improved.
My gut instinct tells me it’s the machine settings. To be on the safe side though, I’ll be getting the 2D Echo done again. If it’s the heart I’m thinking it should happen when I’m awake as well. It happens when I’m asleep or just woken up. So I’m really thinking it’s the machine setting.
A part of me is really scared to find out. Dealing with Pompe is hard enough and I don’t think I can deal with another disease. Not at this time at least. So I’m really hoping nothing serious is wrong with me.