Today, we finished what was supposed to be a short appointment to put some silver nitrate on a very irritated area at Josiah’s driveline’s entry point. Hopefully, this treatment will help an area that has been bothering him for a couple of months.
After the procedure, we had a chance to chat with the nurse. Naturally, I asked if Josiah had appeared on any offer lists lately. It’s nice to know that he is getting offers. Waiting can feel excruciating at times. They don’t call until they know they are going to accept a heart, and it is time to come to the hospital.
Our amazing nurse looked up how many offers Josiah has had since being added to the wait list. It’s rare for a patient’s family to receive this information, so we’re incredibly grateful.
He was on 19 offer lists last year, although he was only 97 or above 37% of the time. The highest he hit was #7 back in late August. That same day, he also got a second offer, but was #378.
With his rare AB blood type, he lands high on the list for donor organs from people who also have the AB blood type. AB donor organs can only go to AB recipients.
He has been on 12 offer lists so far this year, with 67% of the time being above 100.
Once in January, he was #1, but the heart wasn’t a good match.
In mid-May, Josiah was #2 on a list. This one might have been a good match, but it ultimately went to the first person. We are so happy for them!
And yesterday, he was #4. But the first 3 on the list weren’t a good fit. So he became #1 on the list. Sadly, the heart was too small. 😳
It turns out that when a heart that is too small is placed where a larger heart was, there can be major issues leading to yet another heart failure. So they double-checked all the measurements of his heart and the donor’s heart, just in case. They had to pass.
Thankfully, Josiah is stable enough that he can wait for the right heart. (I’ll share more in another post about the many variables that determine where a patient falls on the list.)
All of this made us evaluate if we are ready to get the call…for life to be upended. Honestly, the waiting has made us feel less urgency. With the stats I shared, it is possible that the call could come sooner rather than later, so we have some work to do, including speeding up our fundraising efforts.
In light of all this, if you’re able, we’d love for you to join us at MOD Pizza today, June 5th. Your presence would mean the world. Click here for the details.
Thank you for being part of this journey with us!