Health Update

It has been both a slow and eventful few days health-wise for Will. He has been working hard at his recovery, walking the dog every day since he's been home from the hospital and trying to drink at least 2 quarts of water a day. No real change in anything yet, his lung functions are still down quite about from his baseline. (They are about 41% of what is predicted for someone of his age and height.)

After still hearing nothing from the hospital about the results of his bronchoscopy, and wondering about if they had a plan to protect his kidney-function by giving extra iv fluids or something after his scheduled colonoscopy, I called the nurse-transplant-coordinator on Thursday about noon. They are mostly quite good, but there is one who is a total mess. Never has the right information or units for test results; is always screwing up dosing instructions and just in general does not give out reliable information. So, the one who is a total mess calls me right back; and then when I don't pick up my work phone b/c I'm on a conference call she calls my cell phone; and then when I don't pick up my cell phone she tries to call Will at home and then on his cell phone. Never have I seen the transplant clinic try so hard to get hold of us. Well, turns out that they did not want Will to have the colonoscopy after all. (This information finally reaches him about 30 minutes before he is supposed to drink the yucky drink that starts the, umm, process.) I suspect the instructions had been sitting around in the chart on on the nurse-coordinator's desk for at least 24 hours and she had just not paid enough attention to call. But, that could just be my past bad experiences with her talking.

At any rate, the cancelled the colonoscopy because they found CMV in the bronchoscopy. But she couldn't tell if it was shell vial or active infection. And she didn't know how much. And she wasn't sure the level of CMV in Will's blood. And his regular doctor is on vacation (or something) and all the other doctors are at a conference so, according to her, there was absolutely no one he could talk with to get a better sense of his test results. Nonetheless she was adamant that he must start on iv ganciclovier, immediately. If Will does, in fact, have CMV colitis this is the same medication they would give him anyway, hence the cancelling of the other test. On the other hand, if he doesn't have an active CMV lung infection and if he doesn't have CMV colitis, than he's getting treated with something pretty serious for no reason. No way of knowing right now since there was no one with a clue we could find to talk with at the hospital, and Will decided to start treatment, just in case. He is concerned about his lung functions not bouncing back and is, I think, looking towards anything that might help. So, that's all we know until Monday when hopefully I can track down someone who can really read the chart and tell us what is going on.