The heart is the substance.

Sunday, June 14, 2009

One month countdown

It is officially one month until the surgery. As I promised, what follows is the story of how I came to need a heart valve repair.

Finding out about the "heart murmur."
As a sophomore in college, I began experiencing numbness in my arms and face, dizziness, and even fainting in a choir concert (it was during the spiritual 'Ain't got time to die,' no, I'm not kidding). I was also experiencing migraines, which was only mildly impeding my schoolwork. So, I went to the doctor. As he listened to my heart, he said, "did you know you had a heart murmur?" (a question I would hear from every doctor for the next 5 years). I was sent to get an echocardiogram, to see what type of murmur and the status of my heart. I was diagnosed with mitral valve prolapse (meaning the mitral valve does not close at the way). I also had mild regurgitation or insufficiency (meaning that the blood ran backwards into the left atrium). At this point, I was told to take antibiotics when I went to the dentist and watch for signs like shortness of breath and swollen ankles. So, I did. I took some antibiotics before each dental visit.

In May 2008, I moved to Durham, NC to begin a chaplaincy residency at Duke University Medical Center. In late May, early June, I began to feel a little strange. I would go up to the floors and feel dizzy if I stood on my feet too long. I would go home at the end of the day fall asleep, completely exhausted from the day. I felt somewhat sick on certain days, but it was hard to pin down what was really wrong. I began to have a very slight fever. My insurance kicked in on July 1st, and on that day, I went to "urgent care." I was put on antibiotics to treat "tick fever," which is very common in the summer months in this area. A week later, I had a fainting spell at work, which sent me to the ED. After the appropriate amount of blood removed and they felt they had asked if I was pregnant enough times, the doctor came by. She said that I had an elevated number of band cells (immature white blood cells). She said this could mean three things: I had an abnormal amount of these just by chance, I had an infection, or I had cancer. Needless to say, the next days of anticipation for more tests to come back were a little tense. She called me at the end of the week and told me that I did not have cancer, but requested that I set up an appointment with a primary physician as soon as possible. I saw a primary doc the next Monday. She did the swab test for strep, which came back negative. The other blood work showed that I had an infection and because of my heart murmur, I would need to go to the hospital and get some IV antibiotics. She stated that I would simply go for a little while each day. I headed over to the ED again, where my doc had called ahead to fast track me. Pretty soon after the doctor looked at my blood samples, he informed me that I would not be going home. I would be staying in the hospital to be treated for endocarditis (an infection in the lining of the heart). By this time, my finger was throbbing. I thought I had burnt it, but learned later that this is a sign of endocarditis. I also had marks under my fingernails where pieces of the infection broke off and traveled to the extremities. Five days later, I was sent home with a PICC line in my arm, where I would administer antibiotics to myself each day for the next 3.5 weeks. Sparing you the details of this process, I would flush my line each morning and do antibiotics at night, so as not to interfere with work. I wore a fashionable sock over my arm, which a friend actually commented "looked cool." (That's me, the image of cool.) The whole experience was somewhat surreal. They actually let normal people inject meds into their arms??? Weird. I even travelled with my line and antibiotics to a friend's wedding. I was thankful to go, even if I had a tube in my flesh and a sock over my arm...

I recovered well, and felt as good as new in a couple of months. My cardiologist and infectious disease docs felt like I was doing well and placed no restrictions on my care. My responsibilities were to go to the cardiologist once a year and get an echocardiogram and to take my antiobiotics before any procedure that could allow bacteria to get in my bloodstream.

May 2009
I went for my year check up. They actually squeezed me in a week late, because I was home for my grandmother's funeral on my original appointment date. I did my echo first, then saw the doctor. Dr. Bashore came in, listened to my heart (he's a cardiologist after all), and then said, "let's sit over here and look at your echo." He explained extensively the workins of the heart and that it appeared my heart was having to expand more than before to pump the blood through my body. He acknowledged that the numbers were on the edge and that it was getting time to start thinking about having my valve repaire, probably in the next year. I laughed to keep from crying, then I teared up and I think he knew that the news was not expected nor desired. He wasn't completely convinced that the echo was accurate, so he sent me for an MRI that afternoon. I trucked myself back to Duke (I was on-call... ha.) H came and sat with me as I waited to have my first MRI. The nurse did a good job placing my IV and asked me what type of music I wanted in the headphones, since they had satellite radio. I requested folk, to which he replied, "we don't get that request very often." It was a pretty sad folk station actually, but that's beside the point. Throughout the MRI, I had to hold my breath in intervals of about 10 seconds so they could get pictures of my heart. They also did some pictures with contrast dye. Later that night, I called the doctor to confirm the findings which said I would need the valve repaired.

I sprung into research mode, attempting to find out as much as I could. Unfortunately, I breathed "heart valve surgery" as my google search topic, which I believe was less than healthy. It was all I could think about. The grief process started pretty early, denial, anger, etc. (If you don't know anything about the grief process, I vote you check out this video: )

I'll spare you the details the intensity of that week.

I got to talk to the nurse practitioner the next week, who answered my questions and set me up an appointment with Dr. Glower, my surgeon. We all agreed that it would be best to get he surgery done while I was in transition, before I started a new job and while I could utilize the Duke health system.

The meeting with the surgeon went well (even though I was at Duke for about 4 hours). I really liked Dr. Glower. He said he would do everything in his power to repair the valve and not to have to replace it. We decided that if he gets in there and needs to replace the valve, we would go with a biological valve (cow or pig), to eliminate the need for blood thinners and keep the option of bearing children. There are some things he just won't know until they see it up close. I will undergo what is known as a "minimally invasive surgery." They insert a camera into your side through the ribs and use the other usual veins to insert the tools to fix the valve. This surgery has been performed for about 20 years and only certain medical centers do this type of surgery. Dr. Glower is one of the people who does these every day. They will remove the vegetation (scar) that formed when I had endocarditis. They will also insert a ring around the valve to help it close properly.

I am sure I have not included every detail or answered the questions you might have. Feel free to post your questions here.


  1. Megan dear, you are in my heart (literally and figuratively as I also have mitral valve prolapse.) Please keep posting your progress so I can keep clear thoughts about you. I will continue to hold you in my broken heart knowing that healing is always possible. But, of course you already knew that.