Officially Listed!

As of yesterday, March 17th, 2015, I am officially listed for a second heart transplant! So crazy to think about, especially when I am only a week and a half away from the 10^th anniversary of my first heart transplant. I finished up the long and detailed evaluation process on Monday, and they told me that they would present my case to the listing committee, and that I could possibly be listed as soon as the next day. Sure enough, they called me and told me the news the very next day!

The heart transplant waiting list has several different statuses. They go in order from 1a (being the highest priority with the sickest patients) to 1b, to 2, 5, and so on. I believe that only statuses 1a, 1b, and 2 are actually active on the list, and the others are there, but inactive for some reason or another. Throughout the whole process, they told me I would be listed as a Status 2, because I am sick enough to be on the list, but stable enough to be at home with no intervention keeping my heart pumping. Status 1a, as I understand, is reserved for patients that are in the hospital with one or more IV medications, drips, or an LVAD (Left Ventricular Assist Device) that is keeping their heart going. Status 1b is for patients that have any of those things, but are stable enough to be at home, and then Status 2 is as described above, for patients like me. I think I was able to come to terms with the whole idea of a second transplant partially because of the fact that they were being proactive, thinking to the future, and knowing that I could get worse long before a heart becomes available being at a Status 2. Because so many people have LVADs nowadays, they come as first priority when a heart becomes available. So, with trying to avoid ever getting to the point of an LVAD means a longer waiting time on the list. I don’t know if, in my mind, this gave me time to prepare and wrap my mind around the thought, or what. But, when they called to tell me I was listed, they told me that Dr. Kia (one of the cardiologists on the team) wrote a letter for an exception for me to be listed as a Status 1b, due to my worsening symptoms and the quick progression of the CAV that I explained in the previous post.

So, that’s where it stands as of yesterday afternoon. It’s official. I am a Status 1b. I asked them if that changed the time frame that I had been telling family and friends, and they said it is just so hard to say. I could easily still wait for a year or more for a heart to come available, yet I have to be ready at any moment just for the small chance that they find a perfect match. Technically, it could be any time now, day or night. While on the list, life completely changes. The doctors don’t want me more than an hour away from the hospital at any time, now that I am active on the list, just in case a heart became available. That’s hard for me – especially knowing that it could be such a long wait. I don’t want to completely put my life on hold and miss out on important events or family vacations just because they are scheduled out of town. But, I also understand the importance of being close. I know that they are strict with their rules, but they also know that life continues to go on around me. It’s a balancing act – that’s for sure.

So get ready for the roller coaster. As anyone who has ever been on any waiting list for an organ transplant knows, the emotions are everywhere. Anxious, nervous, scared, and overwhelmed often turns to impatient, ready, and wondering if there will ever be a match, and then back again. The waiting game is the worst part. Someone once described it to me as like being pregnant with no due date. Though I’ve never been pregnant, it’s the uncertainty that could make anyone crazy. Here we go!