Timothy's Posts

It's official . . . I am no longer a member of this club. On August 3, 2013, at 2:45 am I received the phone call telling me that Duke had a heart for me! We arrived at Duke around 4:00 am and waited. I went into surgery around 4:00 pm and was out by 10:30 pm. I thought my AVR was tough but it was walk in the park compared to transplant surgery. We've been home a week now and my strength is slowly coming back and I'm starting to feel like a human being again--if I can ever get warm. Thanks for letting me be a part of this wonderful community.

Since my last posting I have been to the EP lab three times, the Cath lab once and finally sent home on April 26 after 16 total days in the hospital. As of this afternoon around 4:30 I am officially listed for a heart transplant. My listing status (1A, 1B, 2 or 7) is up in the air right now but I should know something in a couple of days. I am fine with this process because either way I will get better. At this time, I am concerned for the family that must suffer the loss of a loved one so I can live. I appreciate everyone here and Adam for providing us a place to talk and share our stories. I have set up a site for my transplant at https://www.thestatus.com for updates. Search for me there and I'll add you to the list.

As you may remember I saw Dr Rogers at Duke on March 20, 2013, and had my CPX test. The test showed that my heart had actually improved slightly. The transplant could be put off for a while. Fast forward to the first week of April, 2013, and I started noticing some "funky" rhythms with my heart. They would last a few seconds and occur several times a day. It got so bad that I did go to the doctor in Greensboro and they ran a couple of tests and interrogated my device. The Boston Scientific tech decided to raise the lower limits of my pacemaker from 50 BPM to 55 BPM. Fast forward to last Thursday, April 11, 2013, when I was at a meeting for work. I was standing in the lunch line and had my plate. I started getting really dizzy and my vision started turning black. I knew what was about to happen so I backed up against the wall behind me and went down. My defibrillator fired two times and was charged for a third discharge but my heart went back into rhythm just in time. I was taken to Wake Med so the doctors could do their thing. The Boston Scientific tech interrogated my device and decided to test some parameters. That simple act started another cascade that was soon out of control. I got shocked a total of three times while in the ER. The last shock happened right after I came to after the first two shocks. I had never felt my device go off until then and I don't want to feel it ever again. Through all of this, my valve has worked perfectly and I had a nurse with a son who will need valve replacement surgery at some point. I was able to tell her about this site and the benefits of joining and getting active. Right now, we are waiting on the docs at Duke to make some decisions and recommendations of my treatment going forward. It looks like I am going to be in Duke for the rest of the week.