Thursday, August 16, 2012

the little we know

We have filled the last few days with travel, doctors, driving, and making a huge mess with all of our stuff we brought home, hoping to make some kind of convenient order out of it. We failed. But at least my (Chase's) parents' living room isn't full of our dirty laundry, loose change, and spare batteries anymore.

We got into Dallas Monday afternoon/evening and pretty much crashed. Tuesday morning, we drove to downtown Dallas for an unexpectedly long appointment with a nephrologist who agreed that Julie needs a transplant, and he illuminated the next tiny step in the process: applying to some government organization to confirm transplant eligibility.

Lacking directions (and the name) to our dentist's office, we raced back to the house to wolf down some lunch while getting directions. Julie brushed her teeth to be kind to the dentist. I figured, "Why clean them twice?" We rushed out the door several minutes late.

The dentist office (Preston and Campbell) was in pristine, nearly unused condition, probably owing to the utter lack of customers and the fact that the "hygienists" hardly spoke English and seemed to have never worked on humans before. Long story short (though it was also an unexpectedly long appointment), you should never go there, and you should always do some research if there's a dentist office giving out coupons for really cheap service.

Wednesday we rested. That was nice.

Today, we had another follow-up appointment with the nephrologist for some tests to scientifically confirm what all of our homemade translations of Nicaraguan hospital tests have told us. Then lunch, then a short nap, then coffee, then dinner, now blogging. Then we'll watch Psych.

Now for some medical stuff, if you're interested:

The short of it is that we hardly know anything. As I hinted at a little earlier, this whole deal is only revealed to us one tiny piece at a time. Imagine that the transplant process is a 2000-piece puzzle. We have about 15 of the pieces right now, and only 8 of them are connected. We have no idea where the other 7 fit in. They may even belong to someone else's puzzle.

The little we do know is that first Julie has to fill out paperwork and submit it to be considered along with her test results for transplant eligibility. The organization that reviews it has a name that I've forgotten, but they have to decide if she does actually have end-stage renal disease (ESRD) and if her auto-immune activity is dormant. I have no idea how long this takes.

Once they agree she needs a transplant, volunteers can begin getting tested. We have no idea what that entails.

Once all potential donors have been tested, we believe that doctors (whoever they may be) will decide who is the best match for Julie and then do the transplant.

At some point, I think we're also supposed to meet with a social worker to assess emotional stability and make sure we aren't coercing the donor into donating. I don't know when that happens or who pays for it.

We've also heard rumors about Medicare helping with expenses, but all the information on the Medicare website is ambiguous, using words like, "some," "usually," "may," and "call to learn more."

I'm sure there are a zillion other things that happen along the way, but I think we'll only slowly learn what they are. Honestly, I don't know that we would remember everything if it were told to us all up front.

In the meantime, we're still living life, readjusting to life in the States, making plans, and traveling to four states within the next two weeks!

1 comment:

  1. Oh em gee Chase (I'm assuming it's Chase who wrote this - it sounds like him). That is quite the process for getting a transplant. We will continue to pray for you both. You probably know this, but Mark and Kimberly Robinson just went through the same thing.

    The trip to the dentist office sounds unfortunate...and yet hilarious.


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