The Countdown

     August 23, 2022- to most people that date probably has little importance.  It’s a Tuesday, another day of work, another day of school, another day of everyday normalcy.  But for us, it’s one month and one day that Khadees has been on the transplant list.  Each day is another day that edges closer to what we hope will be THE day.  With each day, we know exactly how many days have passed (61 days since diagnosis, 32 days since listed on the transplant list) and get even more anxious… the more time that passes, the closer he might be on the list, right?  According to UNOS, the wait time for a heart can easily be 6-12 months, or even longer for someone on the list at a Status 4. You never know how many people are on the list, where you're on the list, etc.  Even if he was next today, tomorrow there could be another person listed at Status 3 and two listed at Status 2.  

    There are 6 different statuses on the transplant list, with 1 being the most severe.  Status 1-3 are in the hospital and nondischargeable.  Status 4-6 are able to remain outpatient.  There is also a “status 7,” which is used if someone on the list becomes inactive on the list for a reason like an infection.  If Khadees gets a central line infection, COVID, etc. he would not be able to get a transplant while the infection is active.  The UNOS list has regions, each separated geographically.      

He has a common blood type and currently has 0% PRA’s (don’t worry, that meant absolutely nothing to me at first and I am a nurse).  Panel-reactive antibodies tell the transplant team if he’s likely to reject the heart.  If someone has PRA’s that suggest the donor heart will be rejected, that is not a good heart option for him.  So, if 100 hearts became available today and they matched Khadees, he would be eligible for 100 of them.  If someone who had 50% PRA’s matched, they would only be eligible for 50 out of the 100. (That sounds way more simple, right?  Why aren’t they having me write nursing textbooks?)  So basically, in the very awful situation that we find ourselves in, Khadees has a lot of positive factors working for him to hopefully move the transplant lottery along.

So, for now… we wait.  Khadees has been becoming restless with being so limited on his activity.  He has some days where he has slightly more energy than others, but daily naps are a must and he frequently is short of breath and dizzy.  He’s bored of television, often too restless to read, and he still hasn’t taken me up on my suggestion to learn how to sew (short wife and daughters equals TONS of pants that can be hemmed!)  However, we keep praying, thanking those around us for keeping us in their thoughts and prayers, and remaining hopeful.  This is the countdown we never imagined.  

Tomorrow will be 33 day listed on the transplant list…