Still struggling a bit

• by Kriskent
• 2013-12-16 10:12:40
• Surgery & Recovery
• 1638 views
• 8 comments

I'm a 33 year old female. They discovered that I had Hypertrophic cardiomyopathy when I was 9 years old. Up until recently it was pretty manageable, I just took verapamil and didn't over exert myself too much. Recently I went in for a routine check up and they discovered that I had some kind of block. My heart rate was running low and my heart was having excessive pauses I guess, dropping beats. They took me off verapamil for a while and I was scheduled for a biventricular pacemaker on the 20th of December. However, Thursday night while visiting my father in the hospital I had a severe episode where I felt faint and very weak. I went into the ER and they all seemed very concerned that my heart rate was too low and I was dropping too many beats. So they rushed me to the critical care unit. Many cardiologists came in and out. They decided they needed to put a temporary pacer in through my neck until they could bump up the permanent pacemaker implantation to the following night.

I have a few concerns really. For one, I have very sore achy pain in the center of my chest that hurts when I take deep breaths. Not shooting pains, but sore. One doctor said that this could be due to some bruising in the area around the surgery. Has anyone else ever dealt with this? It seems like most people's recovering and pain has been manageable or central to the shoulder and incision area. I wonder if this is from the temporary pacer? I had two doctors working on me, one seemed to be over seeing a less experienced doctor, instructing her and I did hear him say a couple times, " you are caught on something there, pull back." So I wonder if all the "catching" could have caused bruising and the soreness internally?

Last night I felt a little short of breath, light headed and had some palpitations so I went back into the ER. They gave me blood tests, an ekg, and a cat scan and they found no punctured lung, blood clots or fluid. I was initially paced at 50 but My cardiologist came in and raised my heart rate on the PM programmer thingie. That seemed to help some. She said everything was working fine and checked out ok so I left feeling better.

Tonight however, I was visiting my father in the hospice ( he has cancer and has very little time left which makes all this even more difficult) and I was sitting at the table talking when all the sudden my heart started beating rapidly. it would beat rapidly where I could feel it pounding in my chest and pulsating in my neck. It would slow down a bit after a minute and then start up again. It kept going up and down like this for a good 10 minutes then it stopped. I called my doctor, where I didn't have chest pains, pain my arm or numbness or really short of breath they didn't seem super concerned. I hadn't taken my verapamil yet, so they just told me to take that, and if symptoms worsened go back into the ER.
Now I'm laying on the couch. No more rapid heart beat for now just tired.

So, I know I can't really get any clinical answers here, I'm just writing because this whole thing has been so scary and frustrating. A month ago everything was business as usual. Now I am fearful for my own health and also dealing with the sudden news that my father is dying. I'm sure the stress of it all is not helping. I know they often need to tweak these things to get it all right but I'm just nervous and frustrated. I just want to feel better and not afraid all the time.