Saturday, April 14, 2012

The Long Road

I have a hard time believing that Jay's transplant was only 3 weeks and 4 days ago.  When the nurse called yesterday afternoon to give us Jay's medication adjustments, she asked how he was.  I told her that he was great; he had just gotten up from a nap and was out for a walk.  She sounded a little bit shocked. 

"Is his, um, mind OK?"

I assured her that it was, and that I would not have allowed him out by himself if I wasn't certain that he was going to be fine.  The surgeon had told us at clinic on Wednesday that Jay could be unsupervised for a few hours at a time, and I have been taking that very seriously.  

Post-transplant life has been an amazing learning curve for us.  While Jay's initial recovery (read: discharged from the hospital four days after his transplant) was impressive, there is still an amazing amount of tweaking that the surgeons have to do to get his medications exactly the way they want them.  The idea is to have him on exactly the right amount of medication to ensure that his body has enough leeway to work on its own while keeping it from seeing the new liver as an enemy to be destroyed.  And that's a really tricky business.  

In order to do that, Jay has to have labs drawn every Monday, Wednesday, and Friday.  And those labs have to be drawn at Vanderbilt so that the transplant team can look at them immediately and make medication adjustments the same day.  On Mondays and Fridays we show up at the hospital at 8:00 for the blood draw, we're done by 8:15, and we hear from the team sometime in the late morning or early afternoon. On Wednesdays we show up at the hospital a little before 8:00 for the blood draw and then see the surgeon (along with the Nurse Practitioner).  They all look at Jay's wound, poke around his belly, listen to the details about how Jay's feeling and what his concerns are, tell him how amazing he is, and then tell us that they're not ready for him to be too far away yet.  

This always comes as a shock to me.  I mean, he's going on walks around downtown by himself, we went to the park the other day with friends, his appetite is great.   But then I remember that he and his liver have only been together less than a month.  Regardless of how well he's doing, the surgeon reminds me, he (the surgeon) has no idea what to expect.  We'd like to think that it's smooth sailing, but no one really knows. "If I knew would could go wrong," the surgeon said, "I'd take care of it right now and send you home."

Every single body experiences a transplant differently.  The 60-something-year-old guy who got his transplant two days after Jay has already been sent home.  That's the drawback of being young and healthy, and of having a protracted illness... Jay has a bangin' immune system that wants to fight back against the new organ.  On the other hand, his body has had a long time to deteriorate.  That makes this a tedious process, but probably no more tedious than it is for anyone else.  Because all the surgeons can do is install the organ well and then wait for the recipient's body to respond.  All any of us can do is wait.  

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