Lots O News

Unfortunately Jaisal woke up Sunday with a fever. Since he has a PICC line in his arm, when he gets a fever, we are required to go to the hospital to rule out a line infection. Off we went to CMH, where we were admitted for a minimum of two days. This started our regular "fever" process: blood draw in the ED to check liver function and his CBC, get hooked up to some fluid, check for a UTI, start on some IV vanco and zosyn to cover for gram positive and gram negative bacteria, throw in a chest x-ray and maybe an ultrasound, get transferred to our floor, and wait.

It turned out that the attending on call this week is the head of the transplant team, so I was able to get some answers about the transplant process. Here's what we learned.

(1)Bother doctors and their staff regularly to get anything done. I'm not kidding. We were complaining to Dr. A about the lack of response from NMH about test results, ability to get anything scheduled including Kirk's biopsy, etc. Her advice, call the nurse coordinator and then call her again. Then call the surgeon's office and pester them. Then call IR and say they should have an order for a biopsy and try to get something scheduled, thereby bypassing the nurse coordinator. Also, she said it wouldn't hurt to mention that we will take our liver biopsy "business" elsewhere. And then she told her fellow to talk to the surgical fellow from NMH to see if that can help expedite things. So Kirk and I went from being mildly annoying people making multiple calls, to being full-on stalkers and calling anyone and everyone associated with the living donor transplant program and IR. 2 hours later Kirk's appointment for a liver biopsy was scheduled for Tuesday afternoon (today). The takeaway - don't be patient; don't expect the right thing to happen on its own; bargain for medical care like you would a car; and just keep calling until you get your way. I hate that there isn't a more civilized way to get things done with the hospital, but clearly it worked.

(2) They are really going to write a letter requesting exception points for Jaisal. It's as if Dr. A did not take my 10 days of requesting such a letter seriously until she saw Jaisal. Then she said these infections are really serious and the only way to fix it is to get this liver out so we should work on getting some points. Also, she mentioned that he looks small, so nutrition appears to be an issue, so we should get him some points. Then she went on to say that she may request as many as 30 points for him because of the severity of Jaisal's issues.

Let me put that in perspective. The listing system is a ranking based on points. Scores are out of 40 points, although some people with acute need can be placed on lists above and outside the points system. Jaisal was an 8, although based on his most recent labs he is now a 12. When I spoke with the organ procurement folks at CMH they told me that at 30 they start getting calls for livers, so 30 is a pretty high number. That's great that Dr. A may want to ask for that many points for Jaisal because they think he needs a liver quickly. But, what's crazy is that they think he needs that many points. These are the same people who were fighting me the last 10 days about even writing a letter on his behalf and gave in to my badgering last week to finally write one. Why did it need to be that he had to get a fever and demonstrate that he may have a resistant bacteria, a concern we all had all along, before they got serious about these infections and his need for a new liver??!?!?!?

(3) If Kirk is a match, then CMH will push for a quick surgery (or so they say). I'd been led to believe that there likely would not be OR time to do the transplant until November at this point. Dr. A seems to think she has enough leverage to get something set up sooner. Awesome.

It looks like Jaisal's fevers are under control and we're going home today. Let's hope he can manage to stay out of the hospital until it is time for him to be transplanted.