In dealing with this new world of dialysis, Patrick and I have learned a few things. At least, I've learned 'em -- Patrick's more content to just go with the tide where it takes him, doing what needs to be done, and not overthinking it. The overthinking is my job. And I do that well.
So, a week or so into all of this, here are a few things I've learned.
1.) Doctors believe that you have unlimited resources, and payment for services will come from the Mystical Medical Money Faeries. I think this is because they all make a whole lot of money so they never worry about it, and they have front-desk people to deal with all the complicated stuff like paperwork and billing. Because almost every doctor we've seen has been eager to leap directly into a Very Important Procedure without any concern for our meager bank account, the relative generosity of our insurance, or our work schedules.
And speaking of work schedules ...
2.) When you have a medical condition that must be managed, it is assumed that you have no other places to be during normal working hours. The dialysis clinic where Patrick goes is open from 7 a.m. to 6 p.m., and dialysis takes from 3 to 4 hours. Pat has a job that normally starts at 8:45 a.m., and he has to do dialysis two weekdays (he has three sessions a week, one on Saturday.) So, yeah. Try doing that math. There's "nocturnal dialysis," overnight in a few clinics, but they don't do that with the temporary catheter that he has right now. In a couple of weeks he'll be getting a permanent catheter to do peritoneal dialysis at home, and that will normalize our schedules. But first, there'll be a day off work (both of us) for surgery, a couple of days recovery (just him), and then -- when it's healed -- we both have to attend a full week of 9-to-5 classes to learn how to manage the home dialysis. We're already not making enough money to cover our asses (see: Item 1) and now we're also expected to work a good 20 percent less to attend all of the classes, doctor's appointments, and outpatient procedures.
3.) We're now automatically part of a friendly, inquisitive, chatty brotherhood of Families Dealing with Illness. In doctor's waiting rooms, at the dialysis center, at the class today ... everyone wants to hear our story and share theirs. They smile, they say hello, they introduce themselves. They show me pictures of their dogs on their phones. They offer encouragement, saying, He looks so great! His numbers are that good, already? That's awesome! and even, on occasion, try to hug me.
I understand their desire to connect, their desperation to feel like they're not alone in all of this. I get that. And so I smile, and look at the dog pictures, and answer the questions, and nod and respond to their stories. But it doesn't come easily to me. I'm a private person about a surprising number of things, and when I'm stressed and have troubles, I fold even further into myself. This sudden inclusion in a cabal of instant friends with whom the only thing I share is my husband's need to plug into a machine a few times a week ... I'm not comfortable with this. I don't want it. I want polite nods, and personal space, and to be left the hell alone.
I realize that I'm not the norm in this way, from what I've seen so far. But there you have it.
4.) It's never too early to start filing every piece of paper that you're ever handed, for any reason. Obviously, back in December, we had no idea that we'd be here. Now, I've been advised that some of the paperwork I'll need to fill out will require us to list every doctor he's seen, and at Legacy alone, before he ever got to OHSU, there were six.There are requests for lists of medications, and doctors asking for dates of procedures, and then there's all the bills to sort and send off to the flex-pay company. I'm playing catch-up with a hundred pieces of paper -- and it didn't help that we moved in the middle of all this, either. Yipes.
There will undoubtedly be more things to learn, most of it about bags of suspicious liquid and various types of plastic tubing. Both of us are feeling a lot less side-swiped about the whole thing now, and it's looking less like a life sentence and more like an enormous, long-term inconvenience. Inconveniences aren't tragedies. They're just annoying. And honestly, I've dealt with a lot of annoyance already in this crazy business we call show.
In the meantime, so this post isn't one huge downer, there's this: