The answer is, “Your guess is as good as mine!” But it would be fun to give a little information about how the transplant list works, for those of you who are curious about the wait!

There are 3 “statuses” when waiting for a heart transplant. Status 1a means you are waiting in the hospital and it puts you a little “further up the list.” If you are waiting in the hospital, you are likely more critical, which is why you get higher priority.

Isaac is status 1b, which means he is waiting at home. Thankfully, this means he is stable, but it also means he will likely wait a little longer than those waiting in the hospital.

When we go out of town (any further than a few hours’ drive away), or if our surgeon goes out of town, Isaac goes “status 7.” This means we “push pause” on the waitlist. We don’t lose time, but we also don’t accrue time. Accruing time does move you up the list, but the list is not really linear. There are many factors involved. More on that later. When Isaac is status 7, our team will not receive any calls about a heart if one comes available. This has not been an issue over the last several months because he was still too far down the list.

So, where are we on the list now? That is a great question.

We were told that the approximate and average wait time for someone of Isaac’s age and size is 6-12 months, but because he is waiting at home, it will likely be closer to the 12-month time frame than the 6-month time frame. Isaac was listed on September 19th, which means he has been listed for 7 months. HOWEVER, because of going status 7 a few times over the last 6 months, he has only accrued 6 months worth of wait time.

At Isaac’s heart clinic appointment last Thursday, the team encouraged us to LIVE. They told us NOT to put our lives on hold. To take the trips and do the things! This is great advice. However, this week, we were asked to submit Isaac’s schedule for next year, and we are faced with the reality of the LIMBO we are living in. We thought he would be transplanted and recovered before school started, but the reality is, he likely won’t receive a heart until after school begins. We are considering home-hospital as he enters his second year of high school, until he is rehabilitated from transplant. This feels difficult and disappointing, but it is certainly not the end of the world. We are thankful he is home, not in the hospital, and feeling good!