Monday, May 9, 2011

it's all in the way you look at things

The transplant is not today. I was getting lovely well wishes over the weekend and realized not everyone knew we'd been delayed. In fact, our subsequent date was taken off the table, so for those who might think we're good for May 23, we're not.

There are now a completely new set of hoops that need to be hopped through before a date can be set. And these could possibly have been avoided, if all the previous delays hadn't happened.

Who knows.

I'm still holding tight to it is what is and it'll happen when it's supposed to.

But, the infection my brother developed 3 weeks ago wouldn't have happened if the surgery had already taken place.

Just saying.

And perhaps, if his infected chest catheter had come out when the infection hit, 3 weeks ago, he wouldn't need the additional testing he needs now.


Medicine is not science. There are no definites. There are, often, conflicting opinions and differing interpretations. That, combined with miscommunication, or no communication at all, can lead to where we are.

Waiting. And hoping. With more procedures and specialists to grapple with.

For the next two days, as my brother gets a new catheter and then goes for more tests, I'm designated hospital pick up person. I'm good at that. I bring snacks. I animately chat (which can be supportive or annoying, depending on the situation). I generally have positive cab karma. I excel at shmoozing with nurses.

And after that?

We wait some more. For results of these new tests. To make sure the infection has been completely eradicated. And to let the many people involved in this discuss next steps.

At this point I wish I could host a transplant intervention. Get everyone involved in one room, lock the door, and not leave until everyone agrees on something. Anything. But at least there would be dialog and discussion in real time. And it wouldn't be up to my brother to mastermind that.

That's another thing I find disheartening about the way our system works. Why should patients be responsible for keeping things on track? They're they ones who aren't well—they shouldn't be searching for reports, setting up procedures, dealing with hospitals and paperwork and scheduling issues. There are so many ways a complicated situation like this can be derailed. I feel like, at this point, we've experienced most of them.


But, what can you do? And so I hope. Have faith. Stay strong. Hang on. And keep my fingers crossed that June is the month that's meant to be.

No comments:

Post a Comment