He ain't heavy

Lots of you have asked about my brother, and I appreciate it. Trouble is, I don't really have much to offer by way of an update.

In many ways -- certainly in the ways that are most immediately important -- the lack of update-worthy news is good. Great, even. He is walking unassisted and easily, has been back to work for almost two months, is bowling again (his favorite hobby), and two subsequent CAT scans have showed no new aneurysms building. He looks amazing and is gaining back some of the weight he lost when he was sick. He checks his blood pressure every day and it has been, for the most part, stable. He is easily exhausted and his legs and hips hurt in the evenings, but his spirits are up.

The less great news, though, is that he continues to receive confusing and fractured care with little to no continuity, and he looks to be a long way from receiving a diagnosis. We are afraid that obtaining the latter is the only key to fixing the former. As it stands now, he maintains regular appointments with the original surgeon and cardiologist (in separate practices) who took care of him in the ICU, a special genetic disorders clinic at Indiana University, and the family doctor my siblings and I all grew up with. None of these people and places play well with others, and my brother is constantly on the phone with one or all of them, begging for test results to be explained or faxed or filed.

No one is coordinating his care, and it seems like half the players can't be bothered to even read his charts. For instance, less than a week after the surgeon told him that he should live life with extreme caution since "this could happen again at any time, with no warning," the cardiologist told him he was healthy as a horse and could go play basketball that afternoon if he wanted to.

The most helpful among the caregivers my brother has seen was the IU clinic, who spent several hours with him and worked up an 8-page report of findings. The general consensus is that he most certainly has a collagen vascular disease, but they have no idea yet which one it is. The prime suspect right now is a spontaneous mutation version of this one. He doesn't display many of the symptoms, but the doctors think it might still be emerging and are going to run all the tests again in six months. Which seems like an eternity, but I think I can understand.

It's impossible for me to see this whole health care reform battle through any other lens than the one my family's dealing with right now. Who ARE these people that are so enraged by the threat of fictional socialism that they are willing to deny others the peace of mind that comes with knowing your health will not cost you everything you own?

I will be honest here: I would LOVE a public option. Hell, I would love a single-payer system. But even when I saw the finance committee version of the health care bill, the one that all the Democrats are (not necessarily wrongly) shitting on because of its perceived overcompensations to the right, I was half-ok with it because it contained the main element I'm looking for, the one I think is key to any humane, rational, and just version of health care policy: prohibiting insurers from denying coverage based on pre-existing conditions. I don't (and honestly, won't) understand how any thinking, feeling person can agree to a health system that allows that practice to go on.

As it stands now, my brother's (and really, my whole family's) financial stability rests on his ability to remain employed so that he can maintain his employer-provided insurance. He's a 26-year-old guy with the insides of an old man -- he's going to need medical care, lots of it, for the long term. I feel like the passage of a reasonable health care reform bill would allow my family to just... exhale, you know?

But I'm sure it's much more important to defeat the Commies and, insodoing, maintain our current status as a world leader in health care. Right there above Slovenia.