An Update on my Congenital Heart Disease

I was hesitant whether or not I wanted to write this post. I love reading personal posts so I thought that I would write my own.

I have shared the story of my Congenital Heart Disease in the past. To summarize – I have a complex CHD with multiple diagnoses. I’m currently fifteen days away from being eight years post-op from open heart surgery. I have had four open heart surgeries, eight catheterizations and two cases of endocarditis.

In 2013, I was also diagnosed with sinus tachycardia, after my resting heart rate was going up to 220-260 beats per minute. Since the tachycardia diagnosis, I have also been on a beta blocker to slow my heart rate down.

In February, my medication was increased from 50 mg to 75 mg per day. Since it was increased, I have felt like I was hit by a bus. I have chest pains just from walking around the grocery store, shortness of breath from talking during a casual conversation and increased fatigue. I have been fighting with my medical professionals since February over how I’m feeling and I finally have some *hopeful* answers.

To take it back a bit, I contacted the prescribing electrophysiologist’s office about five weeks ago and explained my symptoms. The response I got from his receptionist was – “well Felicity, I’m not quite sure what you want us to do” and that was the end of that.

Then I had a family doctor appointment and asked her. Her response – “well Felicity, your heart rate is normal for the first time in years so I think your body is adjusting to it.”

Finally, I convinced my doctor to put a Holter monitor on.

Since the Holter, my cardiologist and electrophysiologist have both contacted me directly (no receptionists this time!). My electrophysiologist is concerned that it may be an adverse result from the increase in medication. He has lowered my dose and wants to monitor me more closely. My cardiologist has decided to do an echocardiogram and see her. The thing is, for a doctor who usually takes six months to get into, managed to get me scheduled within a week. To me, that’s kind of scary.

Last night I went to get the new prescription picked up. I asked my pharmacist if I could ask him some questions about my medication and the side effects. He was absolutely appalled that my doctors weren’t taking my symptoms seriously. He told me that if I ever get symptoms like that again, I’m to call him directly and he’ll contact my doctors. He’s extremely concerned that they let me sit for eight weeks with chest pains and shortness of breath.

My goal has been to make it until May 11, 2020 without a medical procedure; making it ten years and a day surgery free. I’m so worried that this little hiccup is going to compromise my goal. However, I’m keeping my fingers crossed that it’s just a medication change. I know that whatever the outcome is, it’s for the best because I know that I can’t keep living this way.

At this point, all I can do is hope for the best but expect the worst.

Please keep me in your thoughts as I am extremely stressed leading up to the appointment. I have my echo at 3:00 on Monday and see my cardiologist after. I know whatever happens, I have lots of love and support from family and friends. I’m still nervous, no matter what, to hear what she has to say. I will definitely update everyone after my appointment.

A cardiologist is a doctor who specializes in the study or treatment of heart disease. An electrophysiologist is a doctor who focuses on your heart’s timing and electrical systems related to irregular heartbeats or arrhythmias. My doctor best describes in lamens terms: a cardiologist is like the plumber of your heart where they make sure that everything is pumping through the system evenly; whereas an electrophysiologist is like an electrician where he makes sure your heartbeat is working evenly throughout the heart.

To finish this post, I thought that I would share my “heart song”. This is the song that I sing at the top of my lungs and feel as though it relates to everything that I’ve been through.