I just wanted to give you guys a central place to get updates on my current little hiccup health-wise. As most of you will have noticed, I waited a while to talk about this on Facebook so that my family and I would have more information when the questions came. So here is the story from the beginning.
March 2014: I went to my PCP before I started studying for USMLE Step 1 for a check up. He heard a heart murmur which he described as a "pan-systolic flow murmur". I had been told I might have a little heart murmur when I was in seventh grade but we were assured it was nothing to worry about. I went back two weeks later and he heard the murmur again. We decided to pursue an echocardiogram (ultrasound of the heart) to make 100% sure that there wasn't anything to the murmur. I have never had chest pain or symptoms so we just "knew" it would be nothing to worry about.
April 2014: I finally got around to having my echo two days after taking Step 1. The ultrasound tech mentioned on her first view of my heart that she could tell that the right side of my heart was too big to fit on the screen like it should. She took all of the pictures she could and kept "hmph-ing" to herself perplexed at why the right side of my heart was so big. She walked outside to see if there was a cardiologist who could make sure she was doing everything she needed to and brought Dr. Garg in. He knew within the first minute or so of flipping through my scans that I had a hole in my heart. That was a shock. He told me he would get back in contact with me later in the day after he had done calculations.
He called me back a few hours later to tell me that I had an atrial septal defect. That's a hole between the right and left atria (septum = wall). At that point he said that my right heart was twice the size it was supposed to be because of this defect and that it would need to be corrected. He said we had to do a cardiac MRI to figure out how big it was and what approach we could use to fix it.
MEDICAL INFO TIME:
I am not a cardiologist, but if you are confused on what I mean by ASD or atrial septal defect...
You have four heart chambers. Up top we have atria (singular atrium) and down low we have ventricles. The blood is supposed to flow as follows: Body --> Right atrium --> Right ventricle --> Lungs --> Left atrium --> Left ventricle --> Body. It obviously gets oxygen from the lungs to feed the rest of the body. The heart is obviously just a pump attached to a lot of flexible pipes. The size of the pipes depends on the thickness of the pipes and the pressure (which depends on the volume) of the flow through the pipes.
My heart flows as follows: Body --> Right atrium --> Right ventricle --> Lungs --> Left atrium...some goes through the hole back to the right atrium and some goes --> Left ventricle --> Body. Because there is more volume in my right atrium and ventricle, there is more pressure and that pressure has made the right side of my heart expand. Basically my right heart is doing twice the work yours is if you are normal.
Yes, this has been present my whole life. When you are in the womb, your heart starts off as a single tube. It then divides into your main vein (vena cava), one atrium, one ventricle, and then your main artery (aorta). As it grows and beats, it twists around itself and grows one septum to separate the atria and one septum to separate the ventricles. The wall between my atria only grew to about 25% of what was supposed to be there. Usually, they can figure out what went wrong based on how the hole looks. Turns out mine is too big for them to even figure that out.
Back to the story:
The next step was to find out if they could fix it with the catheter from my leg and a man-made patch or if they would have to do open-heart surgery to fix it with a piece of my own tissue that they could cut down to size.
May 2014: I got my cardiac MRI and Dr. Donovan (the radiologist) asked me to come to his office so he could explain the films to me because I am a student (very generous of him). He explained that because my right heart was actually pumping three times as much as it should have been (not two like the echo said), I would definitely have to have it repaired sooner rather than later. Also, the MRI revealed that my heart didn't have enough of the wall to attach the man-made patch to. Unfortunately, that is where we are now...scheduling open heart surgery.
Yep, that's right. As an asymptomatic, healthy 24-year-old, I have earned myself a ticket to open heart surgery. Pretty crazy. And yes, we are talking crack my chest, put me on heart and lung machines, stop my heart, operate, restart my heart kind of heart surgery.
We are investigating different options of possibly not having to have the massive zipper-looking scar down the middle of my chest called minimally invasive approaches. We are hopeful that we can find a surgeon that will spare me the horrible scar. The bottom line is we have to get this fixed before my heart gets any bigger and decides it's tired and can't handle the load. That is called heart failure. We are also preventing something called pulmonary hypertension which would eventually head me towards transplant. I am quite attached to my own heart, so we will be doing this soon. How soon, you ask?
Because of my school schedule, I am hoping for either July or September. However, cardiothoracic surgeons care relatively little about my school schedule, so we will see.
I would like to end with my list of things to be thankful for in this season. This is just a beginning of the huge list as God has revealed such faithfulness every step of this journey.
1. My awesome level-headed husband and super-supportive family
2. Not having symptoms or pulmonary hypertension
3. A cardiologist who really cares and gets me information fast
4. A radiologist who still texts me to check for updates
5. An awesome team at "work" who let's me go to appointments when I have to
6. A super understanding medical school who has encouraged me to take care of myself
7. The prayers of all who already know
8. My friends who are already planning a "Get well party"
9. Everyone who has been supporting my family as this is immeasurably hard on them
10. Friends in the medical field helping me get recommendations
11. Dr. Garg's nurse Lisa who is setting up appointments with surgeons right now so I don't have to and calling my insurance and all that jazz.
12. Access to medical care and diagnostic tests I need and medical knowledge to help me answer my own questions.
13. My normal EKG last Monday showing me that my heart is still being awesome at what it does and working perfectly with what it has got
I guess that is coolest thing about this...my heart has been doing triple the work it is supposed to and keeping up well-enough for me not to have ANY symptoms or problems. If nothing else, that assures me that God has put a fighter heart in me that will take this surgery in stride and appreciate the relief it will bring.
I appreciate all of your prayers and support. Feel free to contact me with any questions.
FAQs:
Yes, my heart should shrink back down to normal after the surgery. It will start to feel the relief and start to remodel within one hour of the surgery (WOW) and take about 6 months to a year to get back down to normal.
Yes, I will have to go to the CV-ICU for a day (hopefully only a day) and then be in the hospital for a few days.
Yes, I have contacted people in Memphis and Vanderbilt. No, I have not contacted Mayo.
No, this isn't super rare. Actually some people have tiny ones that never cause problems.
No, the murmur shouldn't have been louder earlier in life. This murmur comes from blood rushing through a pipe or hole. My hole is so big it's not making that much noise because there's not really anything stopping it from flowing there.
Yes, every surgery has risks. However, this is not a complicated procedure for CT surgeons to perform. Most heart surgeons have done lots of these.
Yes, it will be safe for me to have kiddos later. They said give it about a year post-op and my heart should look like normal.
No, that doesn't mean we will have a kid in a year. Sorry, Mom.
