The Phone Call

Tuesday in Salt Lake was a busy day…for the heart doctors. All the cardiologists, surgeons, heart transplant teams for U of U and Primary Children’s met together to decide my fate. Okay, maybe it wasn’t that dramatic but it sure felt like it. The heart teams had a meeting to talk IMG_2741about maybe moving forward with the whole idea of transplant. About two the next afternoon, we called the University Heart Transplant Coordinator. She told us about how it went and how all the heart people want to move forward but she didn’t know what the liver doctors thought. So the heart docs have a meeting with the liver docs, surgeons, transplant teams this week to decide what’s going on there…. I have been told several times that I will have a duel transplant – both heart and liver – all the way to “your liver isn’t sick enough. It will heal itself with a new heart.” It’s just soo confusing!

I found out what my blood type is. I have known before, but I forgot. My blood type is A. So that line is shorter than some of the others. (To understand the transplant list and how it works, please look at my mom’s post called: “Heart Evaluation Continued.”) I also found out that my size is a big factor, since I’m small my line is even shorter than we thought. So short that there is only one other person in line with me…well, I guess ahead of me at this point. So that means I could get a heart for Christmas. The nurse said that the transplant surgeons are very busy during the holidays because of all the traveling and accidents. It’s sad to think about but it’s also good too. Which is weird… :/ That is really good that I may get a heart before the point where I’m living in the hospital with machines being the only thing that is keeping me alive. But that kind of killed our holiday plans….

We had planned to go down to Boise for Thanksgiving with my mom’s family and go to Disney Land for Christmas. But when I get to a certain point on the list, I have to be available because the doctors only have four hours to receive the organ, get me prepped, my organ out and the new organ in me or it is useless. No pressure… 🙂 Because of that, I can’t go anywhere. Pocatello is too far away so I eventually will have to move down to Utah, the Salt Lake area to be more specific… Luckily, most of my dad’s family is down in Lehi so I can stay with them. It will be nice to be with people I know and love. That is really comforting because both Mom and Dad have work and the kids have school. So it’s not like they can drop everything and move with me. It will be hard though because we won’t be together every single day….eh, we’ll cross that bridge when it gets closer… Anyway, because of all that, I can’t leave. It would be rude to say, “Thank you soo much for hurrying quickly to get the evaluation done and the decision ready but, I don’t want to be listed until the new year…” Or if I am listed and then leave and a heart is ready for me, I won’t be able to have it because I’m to far away. So, it will go to someone else…after that, who knows when I would get the chance to get a new heart….So, the the whole family is scrambling around to try and figure out when/what we are going to do about our plans… 😀 Mom, Dad, and I talked about what was going on and the change of plans with the other kids last night. That was an interesting conversation…. Nathan asked why I couldn’t just be tended by Grandma and they can just take lots of pictures and buy me things. Yeah, there is no way that I would let them leave me behind. So we have yet to decide the exact plan…

Anyway, after we find out what is going to happen with the Liver/Heart meeting this week, we get to hurry up and wait for next weeks meeting with the Regional Committee to decide what is going to happen…so technically these guys are the one that will be deciding my fate….

I am really freaking out. If my mind wasn’t confused already, it is really bad now!!! I am super excited, nervous, frustrated, mad (sometimes..), just AHHHH!!! So, right now I am just waiting…….

 

— Sarah

Leave a Reply

Your email address will not be published. Required fields are marked *