Sunday, August 19, 2012

A Story About A Broken System

I would like to tell you a story. I'm certain some people don't want this story told, just as I'm sure I'm too little to be considered a threat. It's a story I would like to tell you, nonetheless.
This is a story written angrily. Forgive me for that, please.

My wife has suffered from iron-deficient anemia her entire life. To date, very little has been done about it. While not life-threatening (and we don't even know if that's true anymore), the anemia has severely impacted how she can live her life. She can sleep for up to seventeen hours a day. Because her body can't absorb iron, she's continuously hungry. There are also a number of emotional issues I won't go into.
When she was first diagnosed, they believed should be cured by prescribing iron pills. She was on these for years--years--with little to no change in her iron levels. Over the course of a ten-year period, few blood tests were even ordered to see what type of effect the pills were having on her. She requested many.

Recently, we were assigned a motivated doctor who referred her to the Seattle Cancer Care Alliance. The specialist prescribed something she'd never tried before; iron infusions. Twelve of them were ordered, meant to replace her depleted iron stores. At the end of them, she should've felt relatively normal. Despite a phobia of needles, she agreed to do them. It meant getting home after dark and sacrificing time with her daughter twice a week, and she did it.

She cried almost every time the needle went into her arm. Her veins were difficult to find for all but the most experienced phlebotomist. She did all twelve.
At first (and I mean after the first two infusions) her energy level spiked. She bristled, became happy. We had hope that just maybe, she'd beaten this thing.

Things soon returned to normal. We began to wonder if the infusions were doing anything at all. A blood test midway through the process showed a minimal increase in her iron levels. By the time the infusions were done, we wondered if they were doing any good at all.

She called the specialist to arrange a follow-up. No one responded.
Repeated calls and emails were not replied too, responded to, nothing. Days turned into weeks as her condition continued to worsen.
We both made a concerted effort to get ahold of someone at either Seattle Cancer Care Alliance or the Shoreline clinic to get either answers, or a referral to see someone else. We were finally able to reach a scheduler, who wasn't able to fit Elisha in for weeks because the specialist was only in the office one day a week, for a few hours a day. Plus, he was spending a lot of time on vacation.

The specialist's nurse finally returned Elisha's phone call and apologized for the delay. Unfortunately, it would be another week and a half before we learned the results of her latest blood draw, and learned where to go from there.

We are supposed to get those results this Wednesday. This process has taken six weeks.
I know that Elisha doesn't have anything as severe as cancer, and I'm aware that everyone is triaged, but this is ridiculous. The free clinic I use treats me better than the health care system she pays into, and that is unacceptable. To go so long with no contact when she pays part of their salary is heinous.

I know she's not the only person in the world to go through something like this. The system is utterly broken, and I don't know how to fix it, but I can at least make everyone aware of it.

Thanks for reading.

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