Sunday, February 20, 2011

Sunny with a Chance of...?

So, it's pretty sunny out. Quite nice actually. Well, cold - I guess. I have not been out, but it looks nice.

Sunny outside, but cloudy inside. The Young Prince - down again. No vomiting (not since Thurs) - but nausea and fatigue and general unhappiness. The unhappiness - like the cold everyone's been passing around - is contagious. I feel like a slug. I don't want to do anything, although I think I will force myself to do a mini-workout. If it were warmer, a walk would be super.

While the meteorologists, like our new friend Matt Noyes from New England Cable News, can predict upcoming weather patterns, no one can really predict the course of Tom's health. But I must hasten to add seemingly contradictory remark that yes, we can predict some things. He really should have fewer and fewer problems the further along we move post-transplant.

Big picture stuff is that he's had no rejections, he's gained weight, he looks great, he feels usually very fine, and he's become quite a spokesperson for the American Liver Foundation and for Organ donation. School is going pretty well...

And here is the BUT. The unpredictable weather event. 

Tom's been having a tough time keeping up. Not because of his intelligence or effort. But he keeps getting sick every 2-3 weeks. It really seems like CVS - which is Cyclic Vomiting Syndrome (not the pharmacy). This CVS thing, it doesn't all fit. It seems like many patients have a migraine component, or their vomiting is more severe during a cycle (multiple times in one hour). That's not Tom. But much of it does fit, especially the part where these bouts of illness follow a real pattern.

And now, where does this leave us? The thing is, I feel like I can almost predict now, when he will get sick. And I'm starting to look at the calendar thinking, "OK, it's been two weeks since he last got sick, what's coming up that's going to get ruined?"

I've kept these doubts mostly to myself, certainly not telling Tom what I'm thinking. I don't need him to expect to get sick on any particular date. Mind over matter, or in this case, Mind or soul getting flattened with depressive expectation. Although, he's smart enough to worry that this will keep happening.

I suppose that after having major mucking around in his gut, there can be some after effects. That all made sense the first few times he went through this. But now? Well, we just don't know.

But I know that even as miserable as this has been for all of us since November, it's not the same as having a sudden urgent issue, like rejection, or a scary infection. I guess you can equate those surprise events to a micro-burst. You might not see it coming, and it can lay down some terrible damage. 

Coincidentally, Tom, along with his fellow campers, was in a micro-burst during 2006, at Camp Wah-Tut-Ca, in Northwood, NH. He survived fine, with a huge story to tell for the rest of his life.